Hi, I am Hillary and the beautiful little girl in the picture here is my daughter Esmé.
When my husband and I decided to have a baby, we never expected that we would spend the first years of our daughter’s life learning to give tube feedings, assess oxygen saturation by sight, and encourage breathing during seizures. But our beautiful daughter, Esmé, has an undiagnosed condition that causes seizures, hypotonia, severe GERD, developmental delays, and feeding problems. With joyful determination, Esmé has pulled through remarkable challenges, including cardiac and respiratory arrest due to aspiration pneumonia when she was 3 1/2 months old. Dealing with these issues, her scores of doctors, two surgeries, weekly therapies, nine hospital stays, and unending tests has been unspeakably grueling.
Esmé’s health challenges cannot be helped. We face the trials of our daughter’s medical care without question. We are prepared to do anything and everything to keep our girl happy, healthy, and safe.
What can be helped is the support in place for people like my daughter. We use Early Intervention for physical and speech therapy, and we now have Medicaid coverage to help with all the things our insurance does not cover. While we have had a fantastic experience with Early Intervention, our experience with Medicaid has left us feeling frustrated, disappointed, and alone. We applied for the Care at Home Waiver for our daughter in August of 2011. Although she was determined by the state to be disabled that month, it took almost 8 months before we were able to begin her benefits. The approval is retroactive to November 2011 in that it covers unpaid medical expenses from that point forward. However, it does not retroactively reimburse for travel expenses, nursing expenses, and many other items that are not covered by insurance.
The idea of this waiver is to help middle class families who care for sick children cover the cost of mounting copays, travel expenses, prescriptions, and other medically necessary items. We have insurance, but copays for her approximately 17 doctors are 30$ apiece. We see a doctor many weeks; some weeks we see four doctors. We buy medical syringes, adaptive clothing, a specialized blender to make her tube feeds, among other things. Her insurance copay on one of her main medications is so high that we essentially pay out of pocket for it each month. We travel to Boston from Upstate New York to see specialized doctors, paying for tolls, hotels, and food along the way. Before Medicaid came through we paid a nurse out of pocket so that I could continue to work some.
I am a doctoral student and my work, fortunately, has been flexible over the last two years, but I was generally unable to perform many of the duties required of me since Esmé needs a trained immediate family or registered nurse to care for her. During the many months wait, we could not afford to pay for a nurse to cover all the hours I need to work. When we would get covered Medicaid nursing support, no one would or could tell us tell us as the months ticked by and I fell further behind in my work. Now we have Medicaid, but cannot find a nurse to fill the hours. Work has been forgiving and thoughtful, but I need (and want) to return to work soon. I love my work. I have been able to hang on to employment, but eight months is a long time to wait for basic nursing care for a child the state determined to be disabled one month into the process. Most people would not have been able to maintain their employment. Thus, the goal of the waiver is defeated in the very process of getting the waiver.
While I am appreciative of Medicaid and the people who have helped us along the way, I am shocked at the redundancy of the system. For instance, we have given Esmé’s complete medical history--a two or three hour saga--at least five times at various points in the process and to various people at county, state, and regional organizations. All of these discussions have been held during work hours. I am horrified at the amount of time it has taken to move through each step along the way and the requirement that these steps be performed one at a time rather than simultaneously. And I am disappointed at how little those at the county and state level often appear to know about the process...or follow through on the process in a consistent manner. Paperwork returned by one person for one problem will be re-returned for a whole new reason the next time. Once a document called a "Letter of Oversight" was the culprit. This letter was written by our doctor stating that he would oversee our independent nurses. The document was returned because it did not have the heading "Letter of Oversight."
The time lags do not end with approval. It took approximately five months to get a piece of medical equipment for my daughter. In this time she could have outgrown in...luckily she grows slowly! However, when the responsibility is ours, time is of the essence. For instance, I forgot to call Medical Answering Services, the company that oversees medical travel reimbursement, during a stressful emergency hospital visit (something our old case worker did for us), I was told that we would not be reimbursed. If you do not call within three days of the service, they will not reimburse. I was supposed to remember to do this in between meeting with doctors, procedures, and all the rest. When I questioned the man about it, he said, "Clearly reimbursement is not a priority for you." Well, if it is between meeting with Esmé's doctors and taking 40 minutes to make such a call, yes. Also, showering, eating, and just about everything else are not a priority at that time, thank you very much!
When I have asked to whom I can direct my concerns about the system I am told vaguely to call my congressperson--there is no real clear policy for parental feedback.
Furthermore, I am astounded at the lack of regulations in place to assure that our insurance covers Esmé’s needs. Our insurance continually denies claims unnecessarily, takes months to reprocess, and has outright lied to us about our coverage. They have refused to provide the letters outlining our coverage--letters that we need to get nursing through Medicaid. While they eventually do what is contractually required of them, it is only after I have spent hours on the phone with them begging, threatening, and, admittedly, yelling, swearing, and crying. These are valuable hours that could be otherwise spent being a productive member of society, an employee, a teacher, and a mother. And while the company abuses it power, I have no recourse for my hours of lost time and misspent energy. On the other hand, if I fall short of my obligations to them--such as forgetting to call in the middle of a stressful hospital admission--we are slapped with penalties. Why can't I do the same to them?
I believe in our country people should get the help they need to become and remain productive and healthy citizens. I believe this is not only a morally correct policy, but also economically sensible. Unfortunately this particular safety net just isn't working. And it is not a safety net that I can imagine many people are trying to take advantage of--no one wants their child to be disabled. I feel fortunate that we have a strong support system of friends, family, colleagues, and neighbors in place to help us through this time. But we are also Americans and the federal system that is intended to help us through an unspeakably difficult period has instead further victimized us, holding us hostage in an eight-month long and incredibly time-consuming bureaucratic ordeal.
Reasonable assurance of health and safety for the most vulnerable members of our nation is an essential promise of society. We are told to just hold on a little longer and our someone will make good on this promise to us. I hope this is true. But in this case hope is not good enough.
For more about Esmé, read Hillary's article in Complex Child E-magazine: http://articles.complexchild.com/dec2011/00350.html
or visit her blog:
