A Down Syndrome Diagnosis Is Not the End of the Story. Here Is the Help Texas Offers Families
October is Down Syndrome Awareness Month. Texas health officials are pointing families to Early Childhood Intervention, and a 2015 state law shapes what parents are told when a test or diagnosis comes back positive.
Debbie Cohen’s son, Leighton, was diagnosed with Down syndrome at birth and spent 29 days in a neonatal intensive care unit. After that, a parent advocate connected the family with their local Early Childhood Intervention program.
"The ECI team helped me navigate case management and became a resource where I could ask any question and feel like I was understood," Cohen said in an Oct. 16 release from the Texas Health and Human Services Commission marking Down Syndrome Awareness Month.
Leighton left ECI at age 3. His mother now sits on the program’s advisory committee and helps other families find their way in. Her story is a good place to start for any Texas parent who has just heard the words "Down syndrome."
The basics
Down syndrome is a genetic condition usually caused by an extra copy of the 21st chromosome, according to the Texas Department of State Health Services. It is not caused by anything either parent did or did not do, and it does not usually run in families.
About 5,800 babies are born with Down syndrome in the U.S. each year, HHSC said, citing the Centers for Disease Control and Prevention. DSHS says about 250,000 Americans have it and their average life expectancy is about 60 years. The state agency says the outlook has improved over time because of advances in medical care, education and public attitudes.
People with Down syndrome face a higher risk of heart defects present at birth, thyroid disorders, and breathing, hearing and eye problems, HHSC said. Babies with Down syndrome will likely have delays in movement, language, self-help and social skills, the agency said. DSHS adds that progress "varies widely and cannot be predicted before a person is born."
What Texas law requires doctors to share
Since 2015, Texas law has required a health care provider who tests for or first diagnoses Down syndrome to give parents state-approved information. That includes expectant parents after a prenatal result. The law, Health and Safety Code Section 161.652, says the material must be current, evidence-based and reviewed by medical experts and local Down syndrome groups. It must be published in English and Spanish.
It also must not "explicitly or implicitly present pregnancy termination as an option" when a prenatal test shows the unborn child has Down syndrome. The companion section says providers cannot be held civilly or criminally liable for failing to hand it over.
DSHS posts that information as a brochure for new and expecting parents. It tells them: "You are not alone in your feelings or on the journey ahead of you."
Early Childhood Intervention: who qualifies
ECI serves children from birth to 36 months. It has served more than 950,000 Texas children since 1981, according to HHSC. A child qualifies by living in Texas and meeting one of three tests: a diagnosed medical condition likely to cause delay, a measured developmental delay (25 percent in one area, or 33 percent if only in communication), or a qualifying vision or hearing impairment. HHSC says some medical conditions automatically qualify a child.
Anyone can make a referral, including a parent, grandparent, day care worker or doctor. About 55 percent of referrals come from doctors and other providers, and families make 24 percent. If your doctor does not connect you, search for a local program on the HHSC website or call the HHS Office of the Ombudsman at 877-787-8999.
What it looks like and what it costs
Each family gets a service coordinator and a plan called an Individualized Family Service Plan, built with the parents as members of the team. Services can include speech, occupational and physical therapy. Most visits happen at home or wherever the child spends the day. The focus is on coaching parents so they can help their child during daily routines.
Evaluation, assessment, case management, the family plan and interpreter services come at no direct cost, HHSC says. Families may be asked for permission to bill insurance. ECI ends at age 3, and the team helps plan the move to school, preschool, Head Start or other programs.
Every child
Texas has chosen to tell parents the truth about Down syndrome without steering them toward ending a pregnancy. That is the right policy. Every child is made in the image of God, and a diagnosis does not change that.
That conviction shows up across Texas medicine and policy, from surgeons repairing a baby’s spine before birth to the debate over whether to keep the state’s children’s autism program. A child with Down syndrome is not a problem to be managed. He is a son or daughter to be loved and helped to grow, and ECI exists to help with that. If that is your family this month, make the call.
