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.

Designed for all ages!  Join us for an educational seminar that will not only address the main health challenges of people with Down syndrome, but also how to address them at every stage of life. Scott Quaife, NSCA-CPT, our Health and Wellness Coordinator, will discuss a variety of ways to incorporate physical activity into your loved one's daily life, as well as common modifications for exercise, alternatives for footwear and motivational strategies.  

Scott Quaife, NSCA-CPT, PNL1 is a dedicated Health and Wellness Coordinator with a passion for helping individuals build sustainable, healthy lifestyles. He studied Behavioral Science at the University of Kansas and is a Certified Personal Trainer through the National Strength and Conditioning Association. Scott is also a Precision Nutrition Level 1 Coach, bringing a well-rounded, evidence-based approach to fitness, nutrition, and behavior change.

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

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

This presentation introduces practical, easy-to-use tools that help individuals with Down syndrome express themselves more confidently. Caregivers will learn how AAC (Augmentative and Alternative Communication) and total communication approaches—like gestures, visuals, signs, and devices—can work together to support understanding, reduce frustration, and build meaningful everyday communication at home and in the community.

Katie Craddock, CCC-SLP is a certified Speech-Language Pathologist dedicated to supporting individuals in developing effective communication skills. She earned her Bachelor of Science in Communication Disorders and Sciences from the University of Central Missouri and her Master of Science in Speech-Language Pathology from Rockhurst University. Katie is passionate about providing evidence-based, client-centered therapy to help people of all ages reach their full communicative potential.

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

As adults with Down syndrome live longer and healthier lives, families and caregivers play an essential role in supporting their independence, safety, and overall well-being. This presentation provides practical, evidence-informed strategies to help adults with Down syndrome successfully navigate the aging process.

Participants will learn how aging may uniquely impact physical, cognitive, sensory, and emotional health in individuals with Down syndrome and how to promote daily functioning at home and in the community. The presentation will cover key areas such as adapting activities of daily living, supporting mobility, promoting meaningful engagement, and implementing home and environmental safety strategies.

Caregivers will leave with tools, resources, and simple adaptations they can use right away to enhance quality of life, encourage independence, and ensure a safe and supportive environment as their loved one ages.

Morgan Hodges, OTR/L is a licensed Occupational Therapist committed to helping individuals build independence and improve daily living skills. She earned her Bachelor of Science in Kinesiology from the University of Arkansas and her Master of Occupational Therapy from the University of Kansas Medical Center. Morgan is passionate about providing client-centered, functional therapy to support meaningful participation in everyday life.

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

Blue Valley 2026 Special Needs Resource Fair

Please join us at the 16th Annual Blue Valley Special Needs Resource Fair!

(No Registration Required)

This is a free and public event.  You do not need to have a connection to Blue Valley Schools to attend. All are welcome.

There will be vendors and information supporting:

- different abilities of all kinds

- therapies and camps

- insurance and case management support

- nutrition and visual needs

- college and continuing education

- financial and legal questions and planning

- pediatric to adult transition resources

- emergency and employment services

- AND so much more!

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.