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 and create access to vital funding IDD funding sources. Tasks or topics may include connecting you to 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.  We will mobilize DSI community partners for you as applicable, and provide introductions to help you avoid dead-ends in your communication efforts. 

All recommendations and resources will be specific to your county and state of residence, and the age and stage of your loved one.  

Missouri families will have access to our Missouri Partnership Coordinator, Jo Michael, a DSI team member with vital knowledge in Missouri Medicaid and Waivers and over 2 decades of experience with IDD connections in Missouri.

Kansas families, in addition to the individualized consultation we provide, we encourage you to access the "Speak Up!" video series created by the Kansas Council on Developmental Disabilties for Kansas residents!  https://www.youtube.com/@kansasddcouncil/videos

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 virtual on Zoom for your convenience.

Down Syndrome Innovations is committed to vetting and mobilizing resources for our families, and this specific resource we are recommending is from MPACT. MPACT, Missouri's Parent Training and Information Center, has a  mission to empower families to advocate for themselves so that children with special education needs can reach their full potential in education and life – through support, training, and education.

MPACT is offering this video series:10 Steps of The Special Education Process Video Series

Navigating the special education process can feel overwhelming, but you don’t have to do it alone. Missouri Parents Act (MPACT) created this 10-part video series to help families understand each key step of the special education journey under the Individuals with Disabilities Education Act (IDEA).

Each short video breaks down a specific part of the process. From evaluation and eligibility to IEP meetings and progress tracking—so you can become a confident partner in your child’s education.

Watch the full series below to learn how to advocate effectively and ensure your child receives the support they need to thrive in school.

To access this video series, click here:

https://www.missouriparentsact.org/school-age-services/special-education-what-you-need-to-know/

This comprehensive training covers essential techniques for recognizing and treating life-threatening emergencies in adults. Whether you are providing professional care or looking out for loved ones at home, this class ensures you are prepared when every second counts.

Target Audience: Caregivers, family members, and anyone wanting to be certified in adult emergency response.

Duration: 4 hours of focused, hands-on instruction.

Certification: Official American Red Cross Adult CPR/First Aid (Valid for 2 years).

Cost: $63.00 per participant.

What You Will Learn Adult CPR: Step-by-step guidance on performing high-quality chest compressions, and rescue breaths. Choking Relief: Techniques for handling conscious and unconscious choking victims.First Aid Basics: How to assess the scene, manage sudden illnesses, treat bleeding, control wounds, and respond to environmental emergencies.Registration & Policies: Advance Registration: Spaces are limited to ensure hands-on practice time for every participant. Advance sign-up is required. Cancellation Policy: We understand that schedules can change. However, because materials and seating are reserved in advance, a minimum of 24 hours' notice is required for any cancellations to be eligible for a refund or reschedule. Ready to get certified? Secure your spot today and gain the peace of mind that comes with being prepared to help someone in need.

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.

Learn more about the conference here

Register Here!

As a fellow special needs parent, Kacy Seitz knows the importance of crafting a whole story plan that considers the complexity of each family's unique situation. In 2013, she created her wealth management practice Whole Story Planning, devoted to helping Special Needs families like hers. In this short workshop, Kacy guides parents, guardians, and family members like you to better understand the planning your children may need during each stage of life.

Topics included:

• Legal Planning Considerations: Special Needs Trusts, Letter/Memorandum of Intent, Guardianship

• Financial Planning Considerations: How to Fund a Special Needs Trust & ABLE accounts

• Benefit Planning Considerations: Finding & accessing federal benefits like SSI & SSDI, Medicaid, Waivers, etc.

Join us at Down Syndrome Innovations on November 11 from 6:30 to 8:00 pm to, ask questions, and talk with a fellow parent in a non-threatening, non-pressure environment. Let's craft the next chapter of your Whole Story together.