Improving Healthcare Outcomes:

People with Down syndrome are maturing and many families are finding it difficult to locate primary care providers to treat their loved ones. There are several reasons for this dilemma.

• A shortage of primary care providers as well as a shortage of primary care providers taking new patients. 
• Many people with Down syndrome rely on Medicaid as their primary source for health insurance and not all healthcare providers participate in Medicaid. 
• Accurately diagnosing an illness or condition in a person with Down syndrome can be overlooked because of lack of knowledge of the healthcare needs of people with Down syndrome. 
• Access to healthcare providers is made even more difficult as 80 of North Carolina’s 100 counties are considered rural with limited healthcare resources. There are few Down Syndrome Clinics and fewer clinics specifically for adults.



NCDSA at Work:

Fortunately, advocates in the Down syndrome and Intellectual and Developmental Disabilities (IDD) communities have been keenly aware of this issue and initiatives have been taken to address this situation. NCDSA works behind the scenes with several organizations to advance this cause and ensure that healthcare information that covers the lifespan of people with Down syndrome is readily available to families/caregivers and health professionals.

• NCDSA families who attended the 2023 NC Down Syndrome Conference recently learned about Down Syndrome Project ECHO and the IDD Medical Health Home Initiative during the presentation “Supporting Families and Healthcare Providers to Provide Quality Care to Persons with Down Syndrome Across the Lifespan”. The PowerPoint slides are available HERE.
• Several healthcare issues related to teens and adults with Down syndrome were presented during the North Carolina Down Syndrome Virtual Speaker Series.
• In addition, NCDSA has information available to healthcare providers on the Medical Outreach page on the NCDSA website. This information is included in Medical Outreach packets distributed to healthcare providers at conferences such as the Annual Meeting of OB/Gyns and the NC Academy of Family Physicians Winter Symposium.

The Impact of Research:

Advancements in treatment is the direct result of research conducted to benefit people with Down syndrome. Life expectancy of people with Down syndrome has increased from 10 years of age in the 1960’s to 25 years of age in the 1980’s to the current life expectancy of over 60 years of age. The NC Down Syndrome Conference included the session “But I’m Not a Scientist! Why, How, and When Families should consider participating in Down Syndrome Research”. The PowerPoint slides are available HERE. In addition to having people with Down syndrome participate in research, everyone can have an impact on research that improves the quality of life and healthcare outcomes for people with Down syndrome. The National Institute of Health (NIH) is the home to the INCLUDE Project, a Down syndrome research plan. Learn how you can advocate for the INCLUDE Project and contact your members of Congress.

Transitioning to Pre-School doesn't have to be a daunting task for parents of kids with Down syndrome. When these transitions are successful, children and families are more likely to experience better long-term successes.



This series includes important information for parents/caregivers of children 1-3.5 years of age. The series will prepare you for the big move from Early Intervention services in to school-age rights and services. The information provided will help you continue to build a strong educational foundation for your child. Learn about the pre-school special education process and your role and responsibilities in the process. Become better prepared to participate on the the IEP team and develop an appropriate plan for you child.

DS-Connect® is a powerful resource where people with Down syndrome and their families can:

• Connect with researchers and health care providers.
• Express interest in participating in certain clinical studies on Down syndrome, including studies of new medications and other treatments.
• Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with Down syndrome across their lifespans.

Back in person for the first time since 2019, the 2023 North Carolina Down Syndrome Conference was a great success. Attendees drove from the mountains and the coast to participate in the full day conference that featured a keynote address by Austin Underwood and his mother Jan Underwood. Twelve breakout sessions covered everything from how to plan for the future to the importance of research for people with Down syndrome. The keynote address was simultaneously translated to Spanish followed by three breakout sessions presented in Spanish covering basic but important information for families with language barriers. Teens and adults with Down syndrome spent the day attending a series of workshops covering healthy lifestyles, communication skills, safety and technology, ending with a karaoke session in the auditorium. A dozen exhibitors were on hand sharing resources and providing further information to attendees. The conference was made possible by our generous sponsors, breakout session presenters, and numerous volunteers. The conference committee is excited to start planning for 2024!



Registration is officially open for the T-21 Mom's Retreat!

Join Moms from around the state January 19 - 21, 2024 for our 3rd Annual Mom's Retreat in Myrtle Beach, SC. The weekend retreat is the perfect way to connect with other moms while relaxing, having fun, and sharing your experience as a T-21 mom. We are excited for the new location at the beautiful Marina Inn at Grande Dunes and hope to see you there!

• Dads Night Out: July 18

Hi NCDSA Community, I am BetsyJohn Lane. It’s so exciting to join the NCDSA family, as the Family Support Specialist. As a mother of 3, with my middle daughter having Down Syndrome, the NCDSA is near to our hearts and is a vital part of our support system. It is a joy to give back and serve a community that has supported our family over the last 6 years!! :) 

I am a NC girl born and raised, and met my best half in college at ECU (Go Pirates)! We have lived in the Knightdale area since 2008. As a former K-6 educator and Instructional coach right here in Wake County, I have always believed high quality education is a right for all students! It is a passion of mine that we strive to create and sustain communities that provide equity and access for ALL! My personal and professional experience make me eager to get to work serving and supporting the families of the NCDSA. I look forward to building connections and relationships with our amazing families, partners, stakeholders, and friends! 

I LOVE spending quality time with my amazing family, I call it my beautiful mayhem ;) Whether it be making crafts, going on bike rides, cooking delicious meals together, trips to the beach or mountains, or just a good ole dance party in the kitchen, with them is my favorite place to be! 

We are looking for exceptional people to join our team. If you are interested in learning more or applying for a position, please email info@ncdsalliance.org.

Available Positions:

• Director of Education

Looking to get involved? Consider giving your time or expertise! We have in person and virtual opportunities available. No commitment is too small!