New spin on an old favorite

One of my favorite parts of my job used to be taking students to the capitol to meet with their legislators.  Texas has a ridiculous legislative session: 140 days every two years. Really? Not much time to get anything done.  We used to plan an event every two years that coincided with the legislative session during which we would educate them about whatever topic we were focusing on, have them write out their talking points and prepare them for their meetings. On the last day we would bus them up the building and turn them lose for some hands on advocacy. I. Loved. It.

So I was thrilled this year when I had the chance to take Baby Girl with me for my first legislative visit day in a couple of years. Unfortunately, the topic was one that I was not to thrilled about: cuts to a program that helps keep medically fragile kids out of nursing homes and at home with their families. Last legislative session, the legislature decided to do away with Medicaid in the state of Texas and move to a managed care system. This would be a great cost savings plan for the state except for one thing they overlooked: you can't depend on a company whose focus is to cut costs and save money to make medically sound decisions for medically fragile children. There is a system of programs (called the waiver programs) that allow families who do not qualify for traditional medicaid to still receive assistance by using medicaid as a secondary insurance. These waiver programs (such as social security disability, the medically disabled children's program (MDCP) and a few others) act as back up for some of the things that some insurance companies may deny or only partially pay for. Baby Girl qualifies through SSI and that has allowed us to have the assistance we needed to get her power chair. There are many issues that came with the rollover of the waiver programs, including many people losing providers, no longer being approved for certain medications, or losing services altogether because the MCO did not approve them as needed services.

*SIGH*

Here's what I presented in writing during my visits -

Dear Legislator:

Thank you for taking the time to meet with us today on behalf of my three year old daughter and the hundreds of families across the State who have been negatively affected by including the HHSC waiver program recipients in the move to StarKids.

My daughter Lexi was diagnosed at 5 days old with a variation of Arthrogryposis Multiplex Congenita called Escobar Syndrome; a genetic condition that causes the majority of the joints in her body to not extend completely. After intensive therapy and stretching that started at two weeks old and occurred daily during our five month NICU stay, serial casting on her feet, wrists and fingers until she was one, and ongoing weekly therapy and continuous bracing on her legs she has gained full range of motion in her elbows. Three years of daily work and only one of the nine major joints that are effected can be used "normally."

In addition to the orthopedic issues she faced, she underwent four  surgeries before she was five months old: a diaphragm plication to relieve the pressure on her underdeveloped lung; a g-tube placement for life-sustaining nutrition; a fundoplication to eliminate reflux issues; and a tracheotomy for ventilator support until her lungs were strong enough to handle the extra work that her body was undergoing.

We have had some amazing therapists and specialists and have been so lucky to see her making steady strides of progress. She was able to have the trach removed late last year and has been cleared by her ENT.
She is walking with the aid of her braces and walker - which is miraculous considering the prognosis of non-mobile she received. She still remains dependent on the feeding tube for the majority of her nourishment.

We were lucky to have a therapist give us the heads up that the StarKids transition was coming because we received no information from the State until the packet telling us to pick a new plan. We were lucky that we only had to sort through the intricacies of two MCO lists of providers - because those were our only options. We were lucky that all of our providers are actually covered by both of those plans.

So why am I here, you might be asking? My daughter is making progress, we've lost no services and got to keep all of our providers. We've been LUCKY - and that's why I'm here.

No parent should have to rely on luck to keep their child alive and growing and thriving.

The parents who are here today have children in need of continuous care, whether due to congenital disease or horrible accidents, leaving them fragile for the rest of their lives. No parent should have to choose between four different providers who have performed surgery on their child to keep them alive. No parent should have to jump through the hoops that have been placed before us in order to help their child accomplish the smallest of goals. No parent should have to cross their fingers at the beginning of each month that they will still be receiving the services that their child depends on to continue making progress.

Medically fragile children should not have been included in this transition and we are asking that you now do all that you can to help us protect Texas' fragile kids by voting against any future cuts to their lifelines.

We are blessed to get to participate in our legislative process. Take advantage of that blessing. This was not how I imagined introducing her to the legislative process; but until she's old enough to have her own voice, it's my job to advocate for her. We had a great day, ran into an old friend, and got to learn how to navigate the capitol building with a stroller. Most importantly, we let our voices be heard.