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.

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. 

Join us for a special evening with Ashley Heyburn, author of Unexpectedly Perfect. Ashley’s story begins with a prenatal diagnosis of Down syndrome, but reaches far beyond exploring unexpected diagnoses, grief, changing expectations, advocacy, identity, motherhood, and hope.

This gathering is designed for mothers raising children with disabilities to connect, share, and feel supported in the stories they never expected to live. The evening will include an informal conversation with Ashley, refreshments, connection with other moms. 

Thursday, November 5 | 6:00–8:00 p.m.

Down Syndrome Innovations | 5916 Dearborn St., Mission, KS

Please note: This evening is intended to provide moms with an opportunity to connect and enjoy meaningful conversation, so we kindly ask that children not attend. If childcare is needed in order for you to participate, please reach out to us when registering, and we will do our best to accommodate your request. email alyssa@kcdsi.org

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.