A- A A+

KCDD's staff is dedicated to serving the intellectual and developmental disabilities (I/DD) community through advocacy, leadership development and education. They work closely with Council Members and state agencies to make a difference in the lives of people with I/DD.

Please feel free to contact the staff members listed below:

Sara Weirnew
Executive Director
785.296.2609
This email address is being protected from spambots. You need JavaScript enabled to view it.

Sara is a national nonprofit executive, disability policy expert and a proud Kansan. She is the former President & C.E.O. of the National Down Syndrome Society (NDSS), where during her tenure at NDSS, she led the passage of the landmark, 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 (381 of 435 US Representatives and 78 of 100 US Senators). Weir also supported a majority of the enactment of ABLE state laws, assisted with over 40 state ABLE plan launches as well as led advocacy campaigns on two important provisions in the 2017 Tax Reform Package including the ABLE to Work Act and the ABLE Financial Planning Act.

Weir's life has been about leading differently, serving others and delivering results with the leadership philosophy of "if you're not at the table, you are on the menu". Sara deploys an “in the trenches” leadership style by engaging directly with constituents - in local communities, in the classroom, on the job site or around kitchen tables. Weir’s passion for “giving a voice to the voiceless” was inspired by Kasey, her late best friend of twenty years from Kansas who had Down Syndrome. Sara quickly realized that the disability community did not have high-powered lobbyists, wealthy corporations or influential political action committees working for them - they relied on the strength of passionate voices outside the political spectrum who were willing to speak up for them. Weir went on to change that, and dedicated her career and service to allow everyone to have a fair shot at the “American Dream” by promoting solutions that give all Americans with disabilities access to a better life.

Weir established the first-ever national employment program for the Down Syndrome community, the #DSWORKS® Program, which partnered with companies, from Main Street to Wall Street, to create career opportunities for people with disabilities. Weir also co-founded The U.S. Future of Work For People with Disabilities Commission" - Tapping People with Disabilities who are Ready, Willing and ABLE to Work with fellow CEOs from Voya Financial and the Society for Human Resource Management (SHRM) and continues to be called upon by employers to help build successful employment and workforce development programs across the country.

Most recently, Weir served as a senior advisor to Missouri’s Department of Health & Senior Services on disability inclusion throughout its COVID-19 plan and response and co-chaired the state’s health equity committee. Weir was also the primary runner up for U.S. Congress in Kansas' Third Congressional district in 2020. Weir has a Bachelor of Arts in Psychology and Political Leadership from Westminster College, a Master of Science in Public Policy and Management from Carnegie Mellon University’s Heinz College and and a certificate of completion from the Emerging Leaders Program of Harvard University’s John F. Kennedy School of Government. Weir has been featured in USA Today, NY Times, Wall Street Journal, NPR, Washington Post, CNN, Fox News, The Hill, Money Magazine, Al Jazeera and many others.

   

allyson mccain

Allyson serves as a Public Executive for KCDD. She has always been passionate about serving people with disabilities and was previously the Executive Director at GiGi's Playhouse Annapolis where she was proud to serve the Down syndrome community in the greater DC, Maryland, Virginia area. In the past, she has worked as an in-home caregiver to a young woman with Autism and volunteered as an art therapy instructor for adults with intellectual and developmental disabilities. Her goal is to help eliminate the barriers that people with different abilities face in pursuing their dreams and living a full life. She is especially concerned with health equality and representation in medical research for people living with a disability. She received her Bachelor’s in Communication Sciences and Disorders from the University of Mississippi and her Masters Degree in Public Policy and Administration from American University in DC. Allyson is beyond grateful to be a part of the Kansas Council on Developmental Disabilities community and hopes to elevate the council’s mission of bringing equitable healthcare to all Kansans with disabilities.
 
 
 
newLola Kernell
Advocacy Coordinator
This email address is being protected from spambots. You need JavaScript enabled to view it.
 

Lola Kernell is an Advocacy Coordinator for KCDD. Kernell is a senior at Bishop Miege High School, where she is involved in Theatre, French Club, National Honor Society, and Campus Ministry. She has been on the Honor Roll each semester, received awards for French, Theology, and the Eric Druten Memorial Junior Scholarship. She is an active lector and server at Curé of Ars Catholic Church, is currently working on her highest level award for American Heritage Girls.

Lola has worked for the Royals, the Chiefs and for Nautical Manufacturing and Fulfillment as part of her participation in Down Syndrome Innovations ACE program. Lola is a peacemaker, is friendly and outgoing, loves public speaking and being an advocate for others, and has great technical computer skills. She is living her dream by working at the Kansas Council on Developmental Disabilities.

 
 
Whitheadshot sqWhit Downing
Program Coordinator
This email address is being protected from spambots. You need JavaScript enabled to view it.
 

Whit Downing serves as the Program Coordinator for the Kansas Council on Developmental Disabilities (KCDD). Before joining the council as a behavioral health consultant in February, Whit most recently was a Leadership Education in Neurodevelopmental and related Disabilities (LEND) Trainee and served as a board member for HeadQuarters Kansas.

As a LEND Trainee, Whit was able to participate in an 18-week class where she learned from professionals in the developmental disability field and discussed current I/DD legislative priorities. As a board member for HeadQuarters Kansas, Whit learned more about suicide prevention, the 988 crisis response system in Kansas, and participated in community events surrounding mental health. As a person who is Autistic while also having survived a suicide attempt, one of Whit’s greatest passions is ensuring that neurodiverse people are always included in discussions surrounding mental health and suicide prevention.

Additionally, Whit has attended three annual Mental Health Advocacy Days at the state capitol where she has been able to advocate for increased mental health resources for individuals with I/DD. Whit also went to the 2024 Disability Policy Summit in Washington DC with the KCDD staff, which she describes as the best experience she's ever had in relation to advocacy. During the summit, she was able to learn more about I/DD policy priorities and meet with Kansas members of the US congress to share her story.

Whit’s education background includes two years of college classes at Washburn University and being a Team Member in the Kansas Youth Empowerment Academies (KYEA) advanced leadership training program called Faces of Change. At Washburn, Whit attended classes on a part-time basis. Her major was Psychology, and she minored in Mass Media.

In 2017, upon graduating from KYEA’s Faces of Change program, Whit was offered a job as the part-time Administrative Assistant at KYEA. A majority of the growth that Whit has experienced stems from the mentorship, programs, and services offered to Whit by KYEA. Whit describes Faces of Change as the beginning of her leadership journey. During Faces of Change, Whit started and helped facilitate an Autism Support Group for young adults. The group met monthly for 12 months at the Capper Foundation in Topeka Kansas.

Whit has not always been open about her struggles, her concerns, or her desires. Growing up, most people would have described Whit as a quiet kid. She communicated a lot through gestures and through writing. Having that firsthand experience of feeling misunderstood and unheard is part of what fuels Whit today in the work that she does. Whit wants to not only share her story, but she hopes to empower her peers to share theirs as well. Whit is a firm believer in the nothing about us without us philosophy and says that being able to work for the Council is a dream come true!

 

new
Rachel Hiles
Communications & Marketing Support 
 

Rachel Hiles is a 30-something aspiring local celebrity do-gooder in Kansas City. She is a proud alum of UMKC, where she obtained her B. A. in Spanish Literature and Language and later an MPA with an emphasis in nonprofit management. She worked in the disabilities field in a variety of roles for over 13 years. She launched her business, nth degree media & designs, in 2018 to gain flexibility in her role as caregiver to her grandma. Rachel also founded Sandwiched KC, a nonprofit dedicated to supporting family caregivers in the Kansas City metro. She completed her caregiving mission and now is dedicated to improving the lives of those who are caring for family members.

 

Charting the
LifeCourse
Framework

Develop a vision for a good life.
Think about what you need to know and do.
Identify how to find or develop supports.
Discover what it takes to live the life you want to live.

Get
Empowered

View Resources

Five Year State Plan
2022-2026

· Creating Leaders & Empowering Advocacy
· Leading Systems Change

 

Read State Plan

Back to top