The Down Syndrome Association of Central Texas

Creating a more inclusive world by supporting families, educators and medical professionals.

From Down Syndrome World Issue 1, 2023

The Down Syndrome Association of Central Texas (DSACT) originated as a small support group for parents of children with Down syndrome. It all started in 1991 with the Eudy family—Kim, Ron and their daughter, Gracie, who was born with Down syndrome.

“A group of us parents with children with Down syndrome in the 1-3 age group decided we would all benefit from a support group,” says Kim. “We wanted an opportunity to learn from other parents and advocate as a group for our children.”

The group, then called the Down Syndrome Support Group of Central Texas, has since grown to offer activities for all ages, scholarships, trainings and more. The expansion culminated in an official name change to Down Syndrome Association of Central Texas in 2003. The mission: to promote inclusion and highlight the abilities of individuals with Down syndrome.

SERVING FAMILIES

Today, DSACT works across Central Texas’ 15 counties, serving about 850 people with Down syndrome and their families. True to the Eudy’s founding vision, DSACT offers five social groups organized by age for people with Down syndrome and their families, as well as Comité Latino, a group for Spanish-speaking members of the Down syndrome community.

“In our youngest social groups, we see how beneficial it is for parents to connect regularly while their children play,” notes Programs and Events Manager Julia Biest, “during these meetups, the parents gain a network of people to go to for questions or moments of celebration that might be unique to the Down syndrome community.”

In addition to social groups, DSACT offers a variety of organized activities for individuals with Down syndrome. “One of our newest recreation programs that I love involves a partnership with a local music school,” says Julia, “The benefits of music in general are basically limitless, but at DSACT we see it as an environment to form friendships, be creative and practice a hobby or passion… It was so much fun to see the joy that music and community brought to our members.”

The organization receives inquiries from people with Down syndrome and their families around the world and are always open to new members from near and far. These long-distance members are provided with resources online, and always invited to participate in DSACT programming remotely.

 “If someone doesn’t have a Down syndrome group to call home, we welcome them to DSACT,” promises Director of Operations Jessica Patton.

SUPPORTING EDUCATORS

In addition to their ever-growing roster of member families, DSACT offers different varieties of memberships for educators and healthcare professionals. These memberships give professionals premier access to resources about Down syndrome, trainings, presentations and more. Like all DSACT memberships, they are cost-free.

“We have about 300 of these members and also hope to increase this number to make Central Texas a better place for individuals with Down syndrome to grow up and live in,” says Julia Biest.

The DSACT provides support for educators through training opportunities, one-on-one consultations and an annual education conference for Central Texas parents and educators. Most of these resources focus on the Down syndrome learning profile and inclusion, the end goal being to give parents and educators the information they need to create high-quality educational settings.

“This will enable families to better support their children and ensure all students with Down syndrome have the opportunities and resources to help them meet their individual potential,” says Luvy Jenkins, DSACT’s Education Manager, “in turn enabling them to lead more independent lives and to contribute to the community and workforce.”

MEDICAL OUTREACH PROGRAM

DSACT also offers a robust array of resources for medical professionals, including, perhaps most notably, the Medical Outreach Program.

“The goal of DSACT’s Medical Outreach program is to ensure every Central Texas family receiving a Down syndrome diagnosis receives accurate, current information about Down syndrome; is treated with care, respect, and support;” explains Luvy Jenkins, “and that every Central Texas medical professional is confident and respectful in delivering a Down syndrome diagnosis and in treating individuals with Down syndrome.”

In 2020, DSACT partnered with the University of Texas at Austin Dell Medical School to create a training program for pediatric residents to help them serve individuals Down syndrome. Over multiple 60-minute Zoom conversations, they discuss the experiences that shaped their lives as members of the Down syndrome community—medical or otherwise. The topic of the Down syndrome diagnosis experience takes center stage.

“One of the most powerful things families remember is their diagnosis experience” says Luvy. “Sharing this experience helps medical professionals understand how important and impactful the diagnosis conversation is.”

This exemplary program is supported by a Global Down Syndrome Foundation Education Grant. In addition to setting the gold standard for Down syndrome diagnosis delivery, Dr. Judy Kim leads the DSACT Medical Outreach Team in training medical professionals on the GLOBAL Medical Care Guidelines for Adults with Down Syndrome.

The Down Syndrome Association of Central Texas is an inspiring example of what we are capable of when we look to one another for support. What started over thirty years ago as a small group of parents has grown, with smart and hard work, into an organization helping create a world in which all members, including those with Down syndrome, are accepted and valued. If you are interested in DSACT’s resources, or are in need a Down syndrome support group to call home, visit www.dsact.org.