I do not like making our private life public for so many to negatively judge but it has become necessary to advocate for the most vulnerable in our society. By visiting the capital last week we hope it has catapulted our issues into the spotlight before it is too late.
Many of you may not know about the state of Texas privatizing the Medicaid system for ~180,000 children. ~5,600 of those children are deemed medically fragile and qualify to receive state assistance do to several extreme diagnosis to be kept out of institutional/medical care with around the clock nursing.
The existing system has been wonderful for us at keeping Hayden healthier (out of the hospital and nursing home) and happier with his family, thus saving the state the cost of nursing, housing, transportation and doctors that is required if in an institution.
The new legislation was passed into law on the 83 session a few years ago. The devil has been in the details that have created processes that are keeping the fragile children from their much needed specialized doctors and supplies. The new for-profit HMOs will deem what is fit for our children (not the doctors or therapists) and gets to keep the $ from the Texas taxpayers if they identify a "savings" or a suitable substitution specialist doctor.
As parents, many have yet to be notified of the changes. They will have a short time to decide and understand the transitioning of the new system rolling out effective 11/1/2016.
Below, was the brief local Austin news coverage of our story Tuesday morning when Hayden and our nurse spent 9 hours on the Senate floor. There have been several stories throughout the state of this coverage.
I have a video of what our one month medical supply looks like. They can not be privately purchased at any store. They require a prescription and even with the prescription, have not yet been approved. Our supplier out of their own generosity shipped our supplies and are still waiting 10 weeks post-surgery for authorization and for reimbursement.
With one day notice, a few of the Senator's aide's whom we had visited with the prior morning, both Republican and Democratic, suggested we testify in Senate Committee meeting. It was a long 9 hour day. I had the privilege of speaking up for those families that couldn't come and like us have extreme costs that could bankrupt our family and cause deadly harm to a child with only a few months of "system transitions".
All of the session is recorded at this link.
http://tlcsenate.granicus.com/MediaPlayer.php?view_id=40&clip_id=11311 which is 9hours 57minutes.
Below is my specific testimony following Natalie.
I was honored to be in the company of these women and glad to be finished with the long day!
We have taken to the capital and want our children and families to be seen. Many have oxygen tanks and feeding tubes beeping down the halls in their wheelchairs.
Families drove with their children from all over the state to tell about the challenges the new system is effecting on our small percent of fragile children as the guidelines have started to go into effect before roll out and without piloting.
This is the testimony in front of the Texas state Health and Human Services Commission where families drove with their children at a significant sacrifice from all over the state to tell about the disabling challenges the new system is effecting on our small percent of fragile children as the guidelines have started to go into effect prior to roll out.
This, I believe was the most powerful testimony and worth your time to watch.
The entire meeting was 5 hours. The public comments will move you! Have a tissue if you click this link.
http://texashhsc.swagit.com/play/09142016-1134
A MUST WATCH!
This testimony was part 1 of public comments as it was so eloquently and powerfully stated.
My testimony was part 3 of public comments.
They are launching this HMO rocket without any piloting or delay for quality control.
WHAT YOU CAN DO ABOUT THE STAR KIDS MANDATE:
* CONTACT LEGISLATORS: Contact your senator and representative, Leadership, and those listed on the House and Senate Health & Human Services Committees. ANYONE can call or email. Ask family, friends, co-workers, providers, and agencies to join us in contacting legislators about this issue. The more calls and emails, the more powerful our message and the more it will resonate with legislators! There is strength in numbers. If we can get their attention, that should help us initiate legislative action.
* CONTACT LEGISLATORS: Contact your senator and representative, Leadership, and those listed on the House and Senate Health & Human Services Committees. ANYONE can call or email. Ask family, friends, co-workers, providers, and agencies to join us in contacting legislators about this issue. The more calls and emails, the more powerful our message and the more it will resonate with legislators! There is strength in numbers. If we can get their attention, that should help us initiate legislative action.
Don't know who represents you at the state level? Use this simple link to check: http://www.fyi.legis.state.tx.us/Home.aspx
* LIKE our public page: Protect TX Fragile Kids
* SHARE this group and our public page with other MDCP parents and your providers; use the hashtag #protectTXfragilekids in your posts.
* FOLLOW on Twitter @fragilechildTX and help spread the word.
* Provide a stakeholder comment about your child and the impact STAR Kids would have on your family for us to share with HHSC and legislators ASAP.
* Provide a list of your child's providers (include physicians, therapists, DMEs, facilities, pharmacies, etc.) via email to the Medicaid managed care box (Managed_Care_Initiatives@hhsc.state.tx.us), and the 2 MCOs in your service area.
* Have you received incorrect correspondence from HHSC? Have you received no correspondence at all from HHSC? Missing your info packet? Please fill out our "miscommunication log" at the request of legislators. Also contact Maximus, the state's enrollment broker at 281.847.0646 or 877-782-6440
* Review the new screening and assessment tool (SAI) located under the "Files" tab.
