KUCDD Consumer Advisory Panel (KUCDD-CAP)
The KUCDD Consumer Advisory Panel (KUCDD-CAP) is an advisory council; a majority of its members are people with developmental disabilities.
The primary function of the KUCDD-CAP is to advise KUCDD’s director, researchers, and staff about issues that are important to people with developmental disabilities and their families in Kansas. The KUCDD-CAP also provides advice regarding the center’s strategic plan and offers feedback to researchers on their current projects, as well as advice about new proposals. Perhaps most importantly, the KUCDD-CAP connects the KUCDD to other organizations in Kansas that are working to improve the lives of people with disabilities and their families. The KUCDD-CAP meets virtually or face-to-face four times each year.
KUCDD-CAP Members
Aaron Alspach
Self-advocate Coalition of Kansas (SACK) representative
Garden City, KS
My name is Aaron Alspach. I’ve been an advocate since 2001. Some of my leadership activities have included visiting with Sen. Moran about Amtrak and transportation for people with disabilities and participating in Push Day at the Capitol in Topeka. I am the current Vice President of the Self Advocate Coalition of Kansas and I recently graduated from Kansas Leadership Center training.
Alexandra Dahlgren
My name is Alexandra Dahlgren and I’m a graduate student in the department of occupational therapy at the University of Kansas Medical Center. I came back to school after working for several years in the research industry after an OT helped me to be able to feed my twins while they were in the NICU. I have chosen to pursue occupational therapy because I believe that people of all ages and abilities should be able to do the things they want and need to do during the day.
Chris Testorff
Chairperson
Yates Center, KS
My name is Chris Testorff. I am a Past-President of the Self-Advocate Coalition of Kansas and have spent many years advocating for people with disabilities. I try my best to encourage everyone I meet to recognize their value to the world and to be the best person they can be, and that includes people with disabilities. I am proud to be the Chairperson of the KUCDD/LEND Consumer Advisory Panel and to contribute to all of the great work at KUCDD and LEND.
Colin Olenick
My name is Colin Olenick. I work for the Self Advocate Coalition of Kansas (SACK) as the legislative liaison. I track the movement of legislation effecting people with IDD in Kansas. I’ve been employed with SACK since 2018, was the Vice President of the organization from 2007-2008 and I also founded the Employment First Committee. I also participated in the Kansas Leadership Education in Neurodevelopmental and related Disabilities (LEND) training program where I shared my experience of having cerebral palsy, autism, and ADHD.
Jason Cooper
Member at Large
Garden City, KS
My name is Jason Cooper. I am a self-advocate who lives in Garden City, Kansas. Advocacy for people with disabilities is very important to me, and I have been involved in the self-advocacy movement for many years. I enjoy attending and presenting at SACK conferences and participating in the SACK chapter in Garden City. I enjoy serving on the KUCDD-LEND CAP and am proud of the work we do.
Rahel Kebede
My name is Rahel Kebede. I’m married & blessed with 4 children. My oldest Caleb who is 19 years old has Duchenne Muscular Dystrophy and Autism. I am his full-time caregiver. Because of the unexpected life journey we faced we have learned and are still learning to Advocate and create awareness of our community wherever we go. I am a LEND graduate & Currently, I am involved in KDHD-FAC, Children Mercy Family Board & FAC, PPMD (Parent Project Muscular Dystrophy) KS/MO family coordinator, and organize the Ethiopian community Special needs support group as well as leading our church special needs ministry. Just recently I got involved in CAP. It is my purpose in life to support the disability community and create awareness.
Rocky Nichols
Disability Rights Center of Kansas representative
Topeka, KS
My name is Rocky Nichols. I am the Executive Director at the Disability Rights Center (DRC) of Kansas. I have over 30 years of experience in non-profit leadership and public policy advocacy (11 as a member of the Kansas House of Representatives, two as legislative staff, and the remainder at DRC Kansas).
Sara Hart Weir
My name is Sara Hart Weir. I am the Executive Director of the Kansas Council on Developmental Disabilities. I am a proud Kansan, national nonprofit executive, and disability policy expert. I served for several years as the President & C.E.O. of the National Down Syndrome Society (NDSS) and ran for Congress in 2020 in Kansas’ Third District. I have a Bachelor of Arts in Psychology & Political Leadership from Westminster College, a Master of Science in Public Policy & Management from Carnegie Mellon University’s Heinz College, and a certificate of completion from the Emerging Leaders Program of Harvard University’s John F. Kennedy School of Government.
My proudest accomplishment is helping lead the passage of the historic, bipartisan Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act in 2014 (P.L.113-295). The legislation garnered the support of 85% of the entire US Congress in 2014. This landmark law allows people with disabilities to have an ABLE account for both short-term spending and long-term savings without jeopardizing benefits.
It was my late best friend of twenty years, Kasey, who happened to have Down syndrome, who inspired me to become a disability activist.
Ski Adams
Member
Kansas City, KS
My name is Ski Adams. I have been a disability advocate for over twenty-three years. Some advocacy activities I have worked on include passages on the Kansas Employment First Law and serving on a five-year core grant review team.
Skylar Schwindt
My name is Skylar Schwindt. I live in my own apartment in Wichita. I’m an administrative specialist for Families Together Inc. I’ve been an advocate for disability rights and supported decision making for many years. I’ve been involved in Design the Future – a program for students developing technology for individuals with disabilities, the Kansas Council on Developmental Disabilities, Kansas Assistive Technology Advisory Board and The GILA Program through CPRF as a peer mentor. I love to participate in Bowling, Volleyball and Basketball with Special Olympics, hanging with my 7 brothers and sisters and Volunteering for Kansas Miss Amazing.
KUCDD-CAP Liaisons
Brad Linnenkamp
KU Lawrence Campus
My name is Brad Linnenkamp. I work for the University of Kansas Center on Developmental Disabilities (KUCDD) as the Community Liaison. Before coming to KUCDD, I worked for the Self-Advocate Coalition of Kansas for 20 years. I sit on several state and national committees including the Self-Advocate Resource and Technical Assistance Center (SARTAC) National Advisory Board where advocates from across the United States are gathering resources for advocacy to be available in one place.
Jessica Schuttler
Kansas University Medical Center
My name is Jessica Schuttler. I have worked as a psychologist in clinical and school settings with a disability focus for the past 15 years. I am also the Training Director for the Kansas Leadership Education in Neurodevelopmental Disabilities program and KUMC Site Director for KUCDD. I am grateful to work with the CAP and to have worked with and learned from many children, families, students, and professionals over my years in the field.