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.

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. 

Join us for this meaningful parent-to-parent conversation on aging, dementia, grief and Down syndrome with Buddy and Carolyn Jones, in collaboration with Down Syndrome Innovations (DSI) and KU Alzheimer's Disease Research Center (KU ADRC). In addition to sharing their family’s personal story, Buddy and Carolyn will encourage other parents to proactively develop a plan for their loved one in anticipation of regression in the aging years and specifically, Alzheimer's disease. 

Buddy and Carolyn Jones have been effective trailblazers and system-change advocates throughout their son's entire life, as well as being mentors and supportive friends to so many parents, service providers, and physicians. Additionally, Buddy and Carolyn have remained in close contact with the teams at Down Syndrome Innovations and the KU Alzheimer’s Disease Research Center, providing vital parent perspectives on services, interventions, and research.

Now they have chosen to sit down for an intimate conversation with other parents who could face a similar experience with their aging loved one, and ensure no one else feels isolated or without resources in this stage of the journey.

Both DSI and KU ADRC acknowledge the science that nearly all adults with Down syndrome will develop evidence of Alzheimer’s disease by late middle age, and therefore  our organizations are taking an active role in education, research, services and supports for aging individuals with Down syndrome and their caregivers. At the conclusion of this presentation, DSI and KU ADRC will guide families in practical next steps.  

All attendees are welcome to come at 6:00pm for a casual caregiver connection time prior to the presentation. DSI will provide drinks and refreshments during this time. 

Service providers and medical professionals are welcome to join to learn and observe. However, we will prioritize the questions of caregivers and parents due to time limitations and the goals of the speakers.  DSI is available to all community partners as a resource in the area of aging and Down syndrome and follow-up consultation is available. 

This presentation will focus on guiding families and caregivers through healthy, developmentally appropriate conversations about puberty, sexuality, and reproductive health. It will outline when to begin thinking about these topics and provide clear strategies for when and how to discuss them respectfully and age appropriately. Attendees will learn about useful resources—including recommended books, visual supports, and teaching tools—that can make these conversations easier and more accessible.

Overall, this session is designed to help caregivers approach sexual health education with confidence, clarity, and practical tools that support the well-being and autonomy of the individuals they care for.

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

Join us for an educational event in the northland of Kansas City on how to support your self-advocate when navigating their employment journey and supporting their career development. Our Director of Employment Services, Amanda Myers, CESP, will share practical tools and strategies to help caregivers guide their loved one from early job preparation to long-term career growth. You'll leave this presentation feeling more prepared and empowered as a partner in your loved one’s employment journey.

Special thanks to Platte County Board of Services for being a funding partner in 2026 and assisting Platte County residents to access vital services and supports through DSI for employment.

Service providers, case managers, and employers, are more than welcome to attend to benefit from this valuable information as well.  

Neuru is a secure, all-in-one platform designed to help families manage the many moving parts of their loved one's care without the overwhelm. We centralize school plans, medical records, and therapy notes into one easy-to-use system, so everything you need is always in one place. You have the ability to import records directly from hospital systems like Advent, Children’s Mercy, St. Luke’s, University of Kansas Health System, and more.

Instead of juggling emails, binders, portals, and paperwork, families can quickly access, organize, and share critical information with teachers, therapists, doctors, and caregivers. Neuru helps ensure everyone on your child’s care team stays informed, aligned, and focused on what matters most: supporting your child’s growth and success.

Built with neurodiverse families in mind, Neuru reduces stress, saves time, and brings clarity to complex care, so families can spend less time managing logistics and more time being present.

¡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 6 de mayo 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!

This seminar will focus on providing parents and caregivers with a clear understanding of the IEP transition process, from the legal requirements to the best practices for ensuring a smooth and successful transition from school to post-school activities.

With a focus on education, employment, and independent living, the seminar will break down the steps parents can take to actively support their child’s growth and future planning, offering actionable strategies and resources that can make a real difference. This session is led by Kathryn Holmes, our Director of Continuing Education. Kathryn created and implemented a transition program in the Kansas City, Kansas school district for over 25 years and shares both the teacher and parent perspective.