Michell Huber with Texas Learning Advocacy presented some great tips on preparing for an ARD, as well as some methods for families to use to be the very best possible advocate they can be for their child in the special ed system.
Unfortunately, we had some technical issues and our video cut out about half way through. Michell was kind enough to share a copy of her presentation and our wonderful volunteer, Amairani translated it to Spanish for us as well. There were a few key points that came from Michell’s presentation.
First- Know your rights- even though it is long and dry, read the procedural guide that you are given at each ARD. It lays out all of your rights and can answer a lot of questions.
Second- Ask for an advanced copy of the paperwork before the ARD so that you have time to go over the goals, any assessments, etc.
Third- Be firm, be clear, be polite, but don’t be afraid to ask for a recess or sign it as “I don’t agree”. You can take home the paperwork from the ARD and make sure you are okay with it before signing that you agree.
Below is Michell’s top goal writing tips, as well as the presentation she shared (full of additional tips, resources and much more). If you need further assistance and/or think you may need an advocate, you can always reach out to Michell.
TEXAS LEARNING ADVOCACY
You can also try COPAA to find other advocates and attorneys. There are more resources listed in the PowerPoint below as well.
Thank you Michell, this information is so helpful! Downloads from this talk are available below and include the presentations as well as the handouts.
On July 31st Casey’s Circle Founder, Marty, Board Secretary, Val and some of our long time volunteers, Sara, Rachel and Natalie were part of KOOP’s Community Pilot Show. They talked about the history or Casey’s Circle, a little bit about Casey herself, and much more.
If you were unable to listen to the interview, you can stream it below:
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.
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.
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.
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
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.