medical outreach

DSACT’s Medical Outreach team visits hospitals, clinics, and other medically oriented organizations throughout Central Texas. We are also available for virtual training and presentations. Whether in-person or virtual, we aim to:

• Collaboratively develop a referral process for your new and expectant patients;

• Provide training on best practices in delivering a Down syndrome diagnosis;

• Provide information and resources to ensure adherence to the Down Syndrome Information Act (DSIA);

• Share resources and information about our New Parent Program

We are a recipient of a Global Down Syndrome Foundation grant which allows us to provide the above virtual training and presentations at not cost to medically oriented organizations.

Down Syndrome Information ACt (DSIA)

Members of DSACT’s Board of Directors were instrumental in the passage of the 2015 Down Syndrome Information Act in 2015. This Act ensures that those who receive a positive screening or test for Down syndrome are provided with accurate information about Down syndrome. Medical providers are required, by Texas law, to distribute the informational handout below to parents at the time of the positive screening/test result.

Down Syndrome Medical Interest Group

Tips for Delivering a Down Syndrome Diagnosis

refer a family to dsact

Parents often want to talk with another parent who has been in their shoes, and that is what we do, so please help them connect with us! Use the forms below to refer your patients to DSACT, or email admin@dsact.org, or call us at (512) 323-0808!

We welcome parents who have a prenatal or postnatal diagnosis and will connect them with a New Parent Coordinator within 24 hours. We talk with expectant parents who are undecided on their next steps, and we are available to visit new parents in the hospital, accompany them on a NICU tour before giving birth, or simply call/email the family. Our New Parent Coordinators provide a nonjudgmental listening ear, and abide by each family’s preferred method of communication. We offer a new parent welcome package to all new parents.

Of course we welcome individuals of all ages, and we encourage all medical providers to make a referral for any patient with Down syndrome and share DSACT’s contact information with these families.

Please help families connect with the DSACT community by offering the brochure at right. We are happy to provide physical copies of this brochure to your hospital/clinic/practice - please use the “Request outreach materials/training” button above.

New Parent Program Brochure

DSACT’s New Parent Program brochure can be offered to families with a new diagnosis of Down syndrome. The brochure is a welcoming introduction to DSACT’s programs for parents with a very young child with Down syndrome and describes our Baby Talk and New Parent Outreach programs. The brochure is in English and Spanish. These brochures are also available in print; please contact admin@dsact.org or (512) 323-0808 if you need additional brochures.

Health Supervision for individuals with Down Syndrome

The American Academy of Pediatrics and the American Academy of Family Physicians recommend additional measures and tests be conducted throughout the life of an individual with Down syndrome, in addition to the typical care provided to their same-age peers. Some conditions are prevalent among individuals with Down syndrome, including:

• Hearing deficits

• Congenital heart disease

• Gastrointestinal concerns, such as celiac disease

• Eye problems, such as cataracts or strabismus

• Hypothyroidism

• Atlantoaxial instability

• Sleep apnea

• Immunologic concerns

• Leukemia

• Alzheimer’s disease, early-onset (please see information from the National Task Group on Intellectual Disabilities and Dementia Practices on the AD drug aduhelm for individuals with Down syndrome and AD)

Individuals with Down syndrome are also at increased risk for overweight, obesity, and osteoporosis, in part due to lower physical activity than the general population. Adults with Down syndrome also have increased risk for dementia. Recent research has shown promise in using physical activity as a tool for preventing cognitive decline in this high-risk population. Recent research, published in the Journal of Applied Research in Intellectual Disabilities, by Nicolas Oreskovic, MD, MPH, shows evidence that, while individuals with Down syndrome who engage in more moderate-vigorous daily physical activity did have lower BMI measurements than those engaged in less physical activity, overall the study sample of adults with Down syndrome was not meeting the nationally recommended physical activity guidelines. ‘Adults with Down syndrome had little health-enhancing daily physical activity, low daily step counts, and large daily amounts of unhealthful sedentary time. Fewer than one in ten adults met the moderate-intensity physical activity recommendations, and only one person met the vigorous-intensity recommendation. Health-enhancing aerobic activity levels were uniformly low, and we did not find any individual or clinical characteristics to help significantly predict the duration of sedentary or physical activity bouts in adults with Down syndrome.’ The results provide reason for further research into the possible reasons for the low activity levels, and interventions to increase activity levels and the health of individuals with Down syndrome. Read the full study here.

Down Syndrome in the 21st Century

We encourage healthcare providers to share this video with families new to a Down syndrome diagnosis. This video shows the abilities of individuals with Down syndrome and interviews with family members about their experiences. It also dispels many of the outdated perceptions of individuals with Down syndrome, showing their ability to participate in sports, be educated in schools, and engage in meaningful employment.