We are committed to preparing your loved one with Down syndrome for a meaningful, productive, and authentic adult life! This requires future planning for parents and caregivers—and we are here to guide you every step of the journey! Long-Term Planning Consultations offer individualized support to parents/caregivers to better prepare for the transition towards adulthood. Tasks or topics may include identifying your county's developmental disability organization (CDDO), navigating the IDD eligibility process, understanding options for case management, referrals to attorneys and special needs financial planners, and defining action steps towards long-term goals. Our Lifespan Service Team will help you prioritize and plan according to your loved one’s age and your family’s specific situation. 

Please register and then we will contact you to schedule an appointment that works for your family.  Appointments can be in-person at DSI or via Zoom.

¡Les invitamos cordialmente a nuestra primera Reunión Familiar de 2026!

Nos complace contar nuevamente con la participación de nuestros amigos de KUARDC, quienes nos acompañarán para ofrecer una presentación sobre nutrición. Jaime Perales Puchal y Kelly Loeb, miembros del equipo de KUARDC, se encargarán de la traducción y la presentación.

Este evento tendrá lugar el 24 de junio en Down Syndrome Innovations, por lo que les animamos a registrarse para recibir recordatorios a medida que se acerque la fecha. Se ofrecerán refrigerios. Si tienen alguna pregunta, pueden escribir a CJ a cj@kcdsi.org. ¡Les deseamos un excelente día!

Caregiver Connection: Aging Years offers an opportunity for caregivers to discuss resources, strategies, community supports, and challenges related to caring for an aging loved one with Down syndrome.

We understand this is a growing group of entire population we serve, with unique challenges and experiences, and we hear how important it is for you all to feel connected. We hope that meeting one another in this group will organically open up opportunities for you all to spend time together face to face as you develop meaningful connections with one another.

All registered participants will receive a Zoom link from the instructor. 

This presentation provides a clear overview of what to expect during well-child visits, including current Down syndrome medical guideline recommendations and the core responsibilities of a primary care provider. Key components such as growth and developmental monitoring, routine screenings, immunizations, and anticipatory guidance will be outlined to highlight what high-quality preventive care should include.

The session will also address common pitfalls and misconceptions that medical providers may have—such as missed developmental concerns, inconsistent follow-up of abnormal findings, or gaps in family education—and will describe how to recognize these issues in practice.

Dr. Kristie Marble is a board-certified Pediatrician and a board-certified Pediatric Hospitalist at Children's Mercy Kansas City. In addition to her hospitalist role, she proudly serves as one of the pediatricians in the Multidisciplinary Down Syndrome Clinic. Her dedication to the Down syndrome community is both professional and deeply personal as it was sparked 17 years ago following the birth of her daughter, who was diagnosed with Down syndrome right after birth. This personal journey inspired her to become an expert in the field and commit herself to educating medical professionals. She is now excited to leverage both her clinical expertise and lived experience to support and educate other parents and families navigating their own paths, in partnership with Down Syndrome Innovations.

If you have any questions please email CJ, at cj@kcdsi.org

Caregiver Connection: DS – ASD is a virtual gathering of caregivers to discuss resources, strategies, community supports, and challenges related to a child or adult’s current or potential dual-diagnosis of Down syndrome and Autism Spectrum Disorder.

This group is facilitated by Down Syndrome Innovations staff, and we will occasionally invite special guests with expertise in this area.  This is a complimentary caregiver education opportunity, provided in addition to the individualized services we provide directly for individuals with DS-ASD for the purpose of skill-development, improving self-regulation and behavior, and increasing independence.

We are providing this group virtually to ensure we are being inclusive of families throughout the region and those who are not able to access transportation, as we understand that facing a dual-diagnosis can already feel isolating in and of itself.  We understand this is a subgroup of the entire population we serve, with unique challenges and experiences, and we hear how important it is for you all to feel connected. We hope that meeting one another in this group will organically open up opportunities for you all to spend time together face to face as you develop meaningful connections with one another.

All registered participants will receive a Zoom link from the instructor. 

The Kansas Council on Developmental Disabilities, in partnership with Down Syndrome Innovations, is proud to host the 3rd Annual SPEAK Up! (Self-advocates Promoting Empowerment and Access in Kansas) conference — a free event designed for self-advocates, parents, family members, caregivers, and professionals on Friday, November 6th, from 8 AM to 3 PM in Wichita at the Drury Plaza Hotel Broadview.

This empowering day will feature inspiring keynotes, interactive workshops, and thought-provoking discussions led by advocates, activists, organizations, as well as federal and state financial, legal, and benefits experts working to enhance resources and information for Kansans with IDD. Participants will explore real-life experiences and expert perspectives on the most critical issues facing individuals with disabilities and their families today.

Register Here!