All posts by Marty Barnes

Medicaid Waivers

Elizabeth Tucker with Every Child shared LOTS of helpful information about the different Medicaid Waivers offered in Texas. She went over the differences between the waivers, how to get services started, and how to fast track you child in some special cases. Elizabeth answered many questions from families as well. If you missed this talk you can watch the video online below.

Thank you Elizabeth, this information is so helpful! Downloads from this talk are available below and include the presentations as well as the handouts.

Downloads:
PowerPoint Presentation – English
PowerPoint Presentation – Spanish
Diversion Waivers and MDCP Limited Stay
Helpful Sites for Texas Children with Disabilities

Part 1:

Part 2:

Supplemental Security Income – SSI 101

Cynda Green with Texas Parent to Parent answers lots of SSI questions. She covered everything from how to start services, who is eligible, what the funds can cover (and what they cannot), what to expect once service begin and much much more. If you missed this talk you can watch the video online below.

Thanks to Cynda, as well as Lori (our volunteer interpreter for this meeting) and PSA for volunteering to help with Child Care.

Neuromuscular Diagnosis – A Closer Look at SMA

The Child Neurology Consultants of Austin recently added a new specialist to their team that has great experience with neuromuscular conditions. We were able to meet Dr. Cardon and she talked about SMA. She specializes in neuromuscular conditions, SMA being one of many. If your child has a neuromuscular condition Dr. Cardon may be a great resource for you and your family. She is working closely with the Austin MDA Clinic to help her patients get the services and resources they need.

We talked specifically about what SMA is, and the latest treatment that has been doing amazing things for many SMA patients. While this treatment is a HUGE step forward, Dr. Cardon reminded us all that this is not a cure and the families still need to work with their entire circles to keep therapies, other specialists, etc moving forward as well.

This was our first Tuesday Talks with a Spanish Interpreter as well. We have many Spanish speaking families that we serve and this is something we have been hoping to add for a while now.

If you missed it live, no problem, you can watch the video below.

Researchers and Parents Working Together Meet Research Milestone

Many of you know all about the Casey’s Circle events, our parent training, and the many tools and resources we offer online as well as our bereavement services. Did you know that Casey’s Circle also works with medical professionals to help with research studies? Currently we are working with a group to help define the best standard of care for neonates that experience seizures. We are very excited to announce that this study has been going very well and we recently met a an important milestone.

We received funding from the Patient Centered Outcomes Research Institute (PCORI) to carry the Continued Anticonvulsants After Resolution of Neonatal Seizures study, a large, multi-center observational research study to better understand how to treat seizures in newborns. We also want to understand how the medical treatments for newborn seizures can impact families as their children grow.

Our 9 participating hospital sites and Parent Partners advisory group span from coast to coast. Families were invited to participate in the study if their baby was born at or transferred to one of our 9 study centers, their baby’s seizures began less than 4 weeks after the baby’s full term due date and required medication to treat, and the family speaks and reads English or Spanish.

We are pleased to announce that we have met our recruitment target and have 304 babies and their families enrolled in the study. As we follow these infants and their families through the first two years of their lives, we will learn about how the neonatal seizures and their treatment influence child development, later seizures, and family well-being. We hope the results of this work will help doctors and families of newborns with seizures as they make treatment decisions and will provide clear information about what to expect for the future.

For more information about the study, please visit the PCORI website:
Continued Anticonvulsants After Resolution of Neonatal Seizures: A Patient-Centered Comparative Effectiveness Study

Comprehensive Care Clinic – CCC

The Comprehensive Care Clinic (CCC) shared lots of great information about their history, services they offer, and much more. Laura, one of the CCC social workers even talked about how to get your child started with the clinic. There are a few qualifiers to be a patient:

  • The patient must be 17 years or younger (they do see some older patients, but all new patients must be 17 or younger)
  • The patient must live within 25 miles of the clinic
  • The patient must have 2 or more systems involved (this basically means that they see 2 or more specialists)

If you missed it live, no problem, you can watch the video below.

2017 Holiday Party

On Saturday, December 9th, we hosted our 6th Annual Special Needs Holiday Party. Along with the Palliative Care Team of Dell Children’s Medical Center we gathered families together to celebrate the holiday. This was our first year having 2 parties instead of just one. We had one that was invite only that we kept small for our more complex families, then we had a larger party for all special needs. Both parties were a ton of fun!

Santa had books for all of the kids, and we had gift baskets donated by local organizations as well as some donated by individuals that we were able to hand out to families as door prizes.

This party continues to grow each year, and we want to say a very special thank you to all of the amazing companies and individuals that help us to make this party such a success…

Our gift basket donors:
Neotech Home Health
Legacy Mutual Mortgage
Natalie Z
The Flores Family
The Gill Family (the Gill’s also help make our Angel Dinner special for our bereaved families)

HEB provided all of the food and drinks, as well as the cups, plates, etc and they delivered it all. HEB supports a lot of local charities and we are so grateful for all that they do for us and other organizations like ours.

Houghton Mifflin Harcourt sent Curious George and the Man in Yellow Hat to read the kids some stories. HMH also provided new books, all wrapped, for Santa to hand out to all of the kids that attend the party.

PSA/Epic Healthcare provided all of the crafts for the kids to do, as well as many volunteers to help with the event.

Natalie Ebaugh Photography donated their time and talent to capture many special moments from the parties.

Casey’s Girl Scout Troop 1306 entertained everyone with some carols. Danielle with Roads of Connection Music Therapy led the kids in a holiday music sing-a-long. We had a lot of new volunteers this year as well, including another girl scout troop and a girl’s basketball team. And of course, we could not have a holiday party without our wonderful Santa and all of the individual volunteers that help us with our events.

We are looking forward to seeing everyone again soon!

Check out photos from this year’s parties – Continue to Album

Early Childhood Intervention – ECI

Easterseals shared lots of great information about ECI services. What is it, who benefits, how do you get services started, what happens when your child turns 3? From beginning Early Childhood Intervention services, to transitioning into the school system… all of your ECI questions answered!

Easterseals also shared information on other programs and services they offer. If you missed it live, no problem, you can watch the video below.