Coming in January:

The comprehensive information presented aims to empower you in maintaining a robust educational foundation for your child. Gain insights into the intricacies of the school-age special education process and understand your pivotal role and responsibilities within it. Armed with this knowledge, you'll be better equipped to actively participate on the IEP team and craft a tailored plan that aligns with the unique needs of your child. Prepare to confidently navigate this crucial phase in your child's educational journey. At the end of the webinar series NCDSA will host a Roundtable that will consist of veteran parents from a variety of placement backgrounds to give their insight and answer questions about their experiences. As a follow-up NCDSA will provide a 30-minute IEP consultation to further assist you with your child's transition. These appointments can be held in person or virtually. 

More About Christina Reaves:

The Transition to Kindergarten Series will be hosted by Christina Reaves. She is not only a dedicated parent but also a tireless advocate for families with children with Down syndrome. With an extensive background in the field, Christina served as the Executive Director for the North Carolina Down Syndrome Alliance for seven years, where she passionately assisted thousands of families in navigating the complexities of advocating for their children's education and rights. 

Drawing from her wealth of experience, Christina brings a profound understanding of the Individualized Education Program (IEP) process, addressing areas of concern, and empowering parents to navigate a system that often seems unattainable to the everyday person. Her commitment to empowering families shines through as she shares insights, strategies, and knowledge gained from years of supporting parents in their journey. 

Currently, Christina serves as the Director of Community Programs for the National Foundation LuMind IDSC, channeling her expertise to a broader audience. Simultaneously, she holds the position of CEO at CWE Consulting, exemplifying her dedication to enhancing the lives of individuals with Down syndrome and their families. She also serves as an officer on the Board of Directors for the Down Syndrome Affiliates in Action. 

Throughout this webinar series, Christina will guide you on a transformative journey, equipping you with the tools to effectively articulate a vision statement, construct a comprehensive "all about me" onepager, and extract pertinent concerns from the provided data. By the series' conclusion, you'll not only have a heightened understanding of the IEP process but also a clearer grasp of your child's rights under the Individuals with Disabilities Education Act (IDEA).

Tailored Care Management Resources:

Tailored Care Management (also known as TCM or just Care Management) began in December of 2022 and is designed for people who receive Medicaid and have an intellectual or developmental disability, severe and persistent mental illness, traumatic brain injury, or substance use disorder. The Arc of North Carolina has created a central resource page for learning about Tailored Care Management (also in Spanish): https://www.arcnc.org/what-is-care-management

New Tool for Transition Planning:

WorkTogetherNC has exciting news for people with IDD, their families and service providers in North Carolina. A statewide, federally funded initiative, Work Together NC, has developed a website that serves as a "one stop" hub for the transition to adulthood. Users can search for services based on their needs, access checklists in the key domains of transition (i.e., guardianship, employment, postsecondary education), and develop personalized action plans for goal achievement. Transitioning to adulthood is hard– no matter what– but now it is a bit less complicated! Check out worktogethernc.com today. Have questions or feedback? Email worktogethernc@med.unc.edu

Tenemos buenas noticias para individuos con discapacidades intelectuales o del desarrollo, sus familias y proveedores de servicio en Carolina del Norte. Work Together NC, una iniciativa por todo el estado que es financiada federalmente, ha creado un sitio web con una colección de información para la transición a la vida adulta. Puede buscar servicios basados en sus necesidades, ver listas de verificación para cada de las áreas importantes de transición (por ejemplo: la tutela, el empleo, la educación postsecundaria) y crear planes de acción personalizados para realizar sus objetivos. La transición a la vida adulta puede ser difícil en general, ¡pero ahora es un poco más fácil! Visita worktogethernc.com hoy día. Si tiene alguna pregunta o comentario, puede contactar worktogethernc@med.unc.edu.   

January 17th: Skin Conditions and Down syndrome

In this session, you will learn about skin conditions seen in people with Down syndrome. The skin is our biggest organ and certainly the most visible, so there will be a lot to discuss! We will start with more common conditions such as dry skin and lips, folliculitis, hidradenitis suppurativa, alopecia areata, and infections such as athlete's foot. We will also discuss less common but important skin conditions to know about including syringomas and elastosis perforans serpiginosa. We will focus on practical tips on how to take care of these conditions. When appropriate, we will discuss how the immune system interacts with the skin and could explain why certain skin conditions are more common in people with Down syndrome.

Dr. Jillian Rork is a pediatric dermatologist at Dartmouth Health in Manchester, New Hampshire. She is also a clinical assistant professor of Dermatology and Pediatrics at Dartmouth Medical School. She grew up in New Hampshire, attended Dartmouth College where she majored in French, and then Harvard Medical School. She is passionate about all things skin and Down syndrome. She specializes in treating individuals with Down syndrome and promoting education and research in this area. She is the co-chair of the Pediatric Dermatology Research Alliance Down Syndrome Subgroup and collaborates regularly with colleagues within the Down Syndrome Medical Interest Group. Dr. Rork loves reading, playing the saxophone, fly fishing, trying new foods, and hanging out with her husband, two kids, and lop-eared bunny.

Keynote Presentation: Addressing Bias in Healthcare for People with Down Syndrome

Progress has been made in reducing bias against people with Down syndrome. However, significant bias persists in health care as evidenced by the experiences of many people with intellectual disabilities during the COVID-19 pandemic.

In this session, Brian Chicoine, MD, will describe bias in health care, define ableism, share clinical examples, and facilitate a discussion of strategies to address bias in health care and the role individuals with Down syndrome and their families can play in the process.

Get to Know Dr. Chicoine, MD

Brian Chicoine, MD, is the medical director of the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, Illinois. He is on the faculty of the Family Medicine residency at Advocate Lutheran General Hospital. He received his medical degree from Loyola University of Chicago Stritch School of Medicine and completed his family medicine residency at Lutheran General Hospital. In 1992, Dr. Chicoine co-founded the Adult Down Syndrome Center, which has served and documented the health and psychosocial needs of over 6,000 adolescents and adults with Down syndrome since its inception. Dr. Chicoine has provided medical care for adults with intellectual disabilities for over 30 years and has presented and written extensively on caring for adults with Down syndrome. 

Save the Date 2024

• February 10 and April 13: New Parent Support meetings
• February 24: NCDSA Annual Gala
• March 9 and May 11: Mentor Training
• March 10: Sunday Funday Family Social
• April 27: 2024 North Carolina Down Syndrome Conference

SIBSHOPS UPDATE!!

No Sibshops this Sunday! We will have a Sib Outing on 12/27 at Partee Shack.

Details will be sent in an upcoming email.

Happy Holidays from NCDSA

Thank you to all who attended the 2023 Triangle Holiday Party, the T-21 Holiday Party, and those we will see at tomorrow's Moms Night Out!

Check out a few of the moments captured at the Triangle Holiday Party below!

We'll see you next year!

WELCOME new families!

It was a great New Parent Meeting this fall. Getting to connect and share with Baby Civel and her rocking family and Baby Adriel and his rocking family.

Please welcome the King and Breev Families to the NCDSA family!! 

Calling all NCDSA moms!

•  Help connect moms in our community!
•  Support your favorite local restaurant or business!
•  Find other NCDSA moms in your area!

We are looking for volunteers to host Moms Night Out events! It doesn't just have to be an evening event, daytime and weekend events are encouraged as well! 

Looking to get involved? Consider giving your time or expertise! We have in person and virtual opportunities available.

No commitment is too small!