Please as you read this post try not to associate the label of a political party with the intent of my comments. I'm doing my best to explain what it is that we are living daily. I open up to share my story because so few people understand what is at stake. What is at stake for our family is of the highest level. It is not insurance deductibles, it is not costs of premiums; it is insurance processes being consistent and transparent that keeps us out of the hospital and at home and out of institutions. Our story is not one of a political football to be tossed around for others political gain.
Today, I prayed for all of the many people in attendance at the HHSC Star Kids meeting. There are leaders over state health care who are doing their best working out the many issues associated with the dissolution of the Texas managed Medicaid model to the new privatization model. I prayed that their hearts and minds would be inspired to listen to the issues that would touch their hearts and their humanity.
There were many issues noted as I listened in on the meeting. Ultimately, those issues that are systematic, in an unproven system, have trickled down to many children that are medically fragile and their families are paying the drastic consequences where the intended "continuity of care" has sorely missed the mark. We have been bearing the burden of process failures while painfully earning and trying to hold tight to services, medications, doctors and special equipment for daily living. I learned in business about accounting projections, forecasts, risk & feasibility analysis and quality control. HHSC has a committee that advises the state about all of these things, and following our testimony and all of the analysis, the committee suggested a delay of 12 months yet it was not listened to by the law makers that appoint the committee and roll out took place this past October.
It has been an overwhelming process transitioning to the new managed care model. I have spent several days crying due to feeling overwhelmed at the snowball of denials. I have been forced to try and learn the role of detective to identify the root of the systematic issues. It has kept me up for many nights. You may have seen me parked and crying in the pharmacies parking lot for not being able to get prescriptions refilled or crying on my phone for an MRI, or waiting for over a year for a wheelchair and mobility aides. Let's just say there has been a lot of crying in parking lots.
Starting off the new year we had our annual Spina Bifida clinic meeting with over a dozen medical professionals meeting in our room giving an oral quiz for a long 6 hour day. Prior to this day, we are ordered to get routine images done for this complex clinic for review (MRI, renal bladder ultrasound and a whole spine X-ray). The stress of having to get images done on a child that is medically complex is enough to be overwhelmed about. Add to it trying to manage scheduling the appointments all together in one day and making sure that it is approved minutes before the procedure that requires fasting for you child all day. This beat me down but I kept getting back up and made it through. This new battle feels as though our freedom is being stripped away to effectively care for Hayden at home and our time and energy is consumed in processes. It has threatened us to seek treatment in the ER, just the place that the new system is trying to keep us out of. Trust me, we want to stay as far away from the ER as much as possible.
New legislation is required this session if we have any hope of fixing the many issues that were brought up today in the meeting by the providers. My work is not done and I am glad I do not have to stand alone. I am fortunate to live in Austin to have the convenience of making the day trip to speak to the politicians. Many families travel from all over the state at their own personal expense of time and sacrifice to attend these meetings. We are families of vulnerable children of all races, socioeconomic backgrounds, and religions. We are a grassroots group of mothers and fathers of fragile children who have to rise up and speak out. #txlege http://www.protecttxfragilekids.org/the-problem-with-star-kids.html
More is coming. We continue to need your help to let the legislators know that this is more of a priority than dollars and cents. Next Tuesday, I will be back at a hearing with Senator Nelson, the author of this mess. If you are interested in knowing when and where you can support fragile Texas kids, let me know and I will be sure to let you know the dates to follow.
I don't want to be involved in politics. I didn't get a law degree. I didn't want to be a doctor or nurse, I didn't get a degree in medicine. I paid to study subjects of interest such as art, mass communication and business for my career. Yet here I am more studied in medicine than I ever imagined. This education was from a fire hose and the cost has been high. I am only now beginning to learn about politics and how the law is used as a game of strategy and that justice isn't guaranteed but I believe this battle is worth fighting for.
Niemöller is perhaps best remembered for the quotation:
First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out—
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.