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By The Numbers

The data below provides a snapshot of the state’s population of people with I/DD and older Americans, Home and Community Based Services (HCBS) Waitlists, and the collective impact of the BADN collaboration.

State Disability Prevalence Date

Est Total State Disability Population (%): 
13.8%

Est Total State Disability Population (#):   
401,200

Est State Prevalence of Developmental Disabilities (%): 

6.40%

State Waiting Lists for Medicaid HCBS

Number of People with IDD on Medicaid HCBS Waitlist:
4,706

Number of People with Autism on Medicaid HCBS Waitlist:
898

Number of People who are Seniors and/or have Physical Disabilities on Medicaid HCBS Waitlist:
700

Total Number of People in State on Medicaid HCBS Waitlist:
6,304

State Aging & Disability Network

Number of Area Agencies on Aging/Aging & Disability Resource Centers: 
9

Number of Centers for Independent Living: 
5

Number of Developmental Disability Regions: 
N/A

CITATION FOR COLUMN 1 DATA: The percentage of non-institutionalized males or females with any disability (all ages; 65+), cognitive disability (all ages; 65+), all races, regardless of ethnicity, across all levels of education in the United States. American Community Survey, 2023. Click here to view the source.
CITATION FOR COLUMN 1 DATA: Centers for Disease Control and Prevention. “Developmental Disability, Estimated Prevalence of Developmental Delay, All States, 2021-22. National Environmental Public Health Tracking Network. Click here to view the source.

CITATION FOR COLUMN 2 DATA: Kaiser Family Foundation. “Number of People Waiting for Medicaid Home Care (HCBS), by Target Population and Whether States Screen for Eligibility, 2024”. Click here to view the source.

*Not all state data is available or is N/A

Projects

The Aging and Caregiving Workgroup within the Kansas Council on Developmental Disabilities’ Health Equity & Outcomes Coalition began in 2023 and continues to make significant progress toward improving supports for individuals with intellectual and developmental disabilities (I/DD) and their caregivers.

The workgroup’s goals are centered on fostering cross-sector collaboration, expanding access to education and training, strengthening the workforce, and advancing meaningful policy reform. The goals include:

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Goal 1

Build stronger connections between aging and disability organizations through the formation of a Systems Advocacy Team (SAT). This effort is designed to elevate the voices of underrepresented communities and organizations that do not traditionally lead with I/DD, ensuring that their needs are reflected in statewide planning and decision-making.

Image depicting interconnected circles with human figures, representing a network or community of people.

Goal 2

Expand access to future planning resources and increase education and awareness around hospice and palliative care within the I/DD community. These efforts aim to ensure that individuals with disabilities, their families, and providers are equipped with the information they need to make informed, person-centered decisions about long-term care.

A simplistic illustration of a person standing in front of a presentation board, pointing at it while addressing a small audience seated below.

Goal 3

Strengthen the Direct Support Professional (DSP) workforce and address the shortage of Transition Coordinators (TCs) in Kansas schools. Long-term goals include enhancing training pathways, improving retention, and establishing a Transition Council to help guide policy recommendations in 2026.

Image of a rolled document featuring a globe and a handshake icon, indicating partnership or international agreement.

Goal 4

Advancing policy efforts related to women’s health by promoting accessible, individualized care for women with I/DD. Priorities include eliminating systemic barriers and supporting self-advocacy through the development of resources created by and for women with disabilities.

These goals reflect the group’s deep commitment to health equity and to improving the aging and caregiving experience for people with disabilities and their families across Kansas.

Highlights/Milestones Achieved

Since its formation in 2023, the Aging and Caregiving Workgroup within the Kansas Council on Developmental Disabilities’ Health Equity Coalition has made significant progress toward its goals. One of the group’s first accomplishments was the successful creation of a cross-sector Systems Advocacy Team (SAT), which brought together aging and disability organizations—including those that do not typically center on I/DD—to align efforts and share expertise. The SAT now meets regularly and includes representation from underrepresented communities, helping ensure equity is woven throughout the group’s work.

In the area of education and training, the group partnered on a Kansas-specific study of the “Future is Now” program to evaluate how future planning resources could be expanded statewide.

Additionally, the group has prioritized hospice and palliative care education by developing plain-language resources and planning a statewide webinar scheduled for September 2025 to increase awareness and access for individuals with IDD and their families. The event included Dr. Jane Chargot from the University of Michigan and Dr. Taylor Jersak from Children’s Mercy Kansas City.

Topics covered:

    • Review of Palliative Care and Hospice
    • Barriers to Palliative Care for Individuals with I/DD
    • Special Considerations for Palliative Care for the I/DD population
    • Advance Care Planning (ACP): What is it and How to Approach ACP in the I/DD Populations
    • Palliative Care in Special Populations: Adolescents and Children

344 total people attended the webinar. The webinar recording is available at https://www.kcdd.org/hospice-and-palliative-care-webinar.

On the workforce development front, the group helped draft and introduce the Kansas C.A.R.E.S. Act (HB2310), legislation focused on strengthening the Direct Support Professional (DSP) workforce. Although the bill did not pass during the 2025 legislative session, it elevated the importance of investing in DSPs and laid critical groundwork for future advocacy. The group also initiated data collection and stakeholder engagement to better understand the shortage of Transition Coordinators (TCs) in Kansas schools. This work will inform the development of a Transition Council and policy recommendations for the 2026 legislative session.

In the area of women’s health, the workgroup has collected powerful testimonies from women with I/DD and healthcare professionals to advocate for more flexible, person-centered care. They also began developing a women’s health guide co-created by women with disabilities to promote self-advocacy and informed decision-making around reproductive and preventive care.

Together, these milestones demonstrate the workgroup’s momentum and continued commitment to improving health equity and outcomes for aging individuals with I/DD and their caregivers across Kansas.

Key Resources Developed

Hospice and Palliative Care + I/DD Guide

Hospice and Palliative Care for Individuals with I/DD Webinar Registration

Kansas CARES Act (HB2310)

A diverse group of seven adults is gathered around a table, discussing and collaborating on a project. Some individuals are looking at a laptop, while others are engaged in conversation. Snacks and drinks are visible on the table.
A woman with Down syndrome is speaking at a conference. She is holding a microphone and smiling while presenting information on a slide about disability awareness. The slide features images and text discussing advocacy and awareness.
A young man with tattoos is giving a presentation to a group of five seated individuals in a meeting room. The audience appears engaged and attentive, with laptops and beverages on the table in front of them.
A group of eight individuals posing for a photo during the Health Equity & Outcomes Coalition event, held on November 6, 2023. They are standing in front of a presentation backdrop featuring the KCDD logo, with two people on the left and six on the right. The group is diverse in appearance, with a mix of genders and attire, all wearing name tags.

State Co-Leads

Allyson McCain

Deputy Director

Kansas Council on Developmental Disabilities

 

Dr. Laura Gaffney

Co-Lead and Primary Care Physician

Advent Health Shawnee Mission

Greta Foye

Council Member and Co-Researcher

Kansas Council on Developmental Disabilities and KU Alzheimer’s Clinic

State Alliance Teams

Andrea Atherton

Regional Medical Director

Amgen and Caregiver

 

Beth Dowty

Interim Executive Director

Special Needs Assured

 

Stacy Crow

Council Member & Parent Advocate

Kansas Council on Developmental Disabilities (KCDD)

 

James Mickens

Recruiting Coordinator

L’Arche Heartland

 

Jim Huber

Aging & IDD Parent Advocate

Onward Kansas

 

Katie Craddock, CCC-SLP

Speech-Language Pathologist

Down Syndrome Innovations

 

Kristi Williams (PhD, RN, FNP-BC, FGSA, FAAN)

Professor

University of Kansas School of Nursing

 

Laura Kozisek

Director & Contracting

Optum Care & Parent Advocate

 

Lola Kernell

Advocacy Coordinator

Kansas Council on Developmental Disabilities (KCDD)

 

Megan Sheppard

Policy and Program Oversight Director

Kansas Department for Aging and Disability Services (KDADS)

 

Monica Pfannes

CDDO Director

Johnson County Developmental Supports

 

Ron Fugate

Co-Founder

Onward Kansans

 

Rebecca Smith

Sr. Clinical Program Manager

United HealthCare

 

Sarah Schlitter

Director of Residential Services

Johnson County Developmental Supports

 

Stephanie Rasmussen

Vice President of LTSS and External Relations

Sunflower Health Plan

 

Taylor Jersak, MD

Pediatric Palliative Care; Clinical Assistant Professor of Pediatrics

University of Missouri-Kansas City School of Medicine, Children’s Mercy Kansas City

Annette Graham

Executive Director

Sedgwick County Department of Aging and Disabilities

 

Courtney Goin

Development Officer

Assured Trust Company

 

Erica Burroughs, JCD

Health Supports Coordinator

Johnson County Developmental Supports (JCDS)

 

Jason Crippen

Transition Coordinator

Goddard Public County Schools

 

Julie Miller

Retired Nurse

Kansas State Nurses Association (KSNA)

 

Kaye Stevermer

Family Advocate for Hospice and Palliative Care

 

Kyle Jones

LTSS Complex Health Specialist

CareSource

 

Lisa Farmer

Community Ed & Engagement Coordinator

Kansas City Hospice and Palliative Care

 

Mallory Taylor

Intern

Kansas Council on Developmental Disabilities (KCDD)

 

Melody Dowling

Health Services Director

United Healthcare

 

Nanette L. Perrin

Sr. Director

Sunflower Health Plan

 

Barbara Penn

Music Therapist (MT-BC)

We Care and Connect

 

Sara Hart Weir

Executive Director

Kansas Council on Developmental Disabilities (KCDD)

 

Stephanie Coleman

Autism Family Educator

Kansas LEND & University of Kansas Medical Center

 

Tammy Dreiling

Family Services Manager

Developmental Services of Northwest Kansas, Inc. (DSNWK)

 

Whit Downing

Vice President of Policy and Programming

Kansas Council on Developmental Disabilities (KCDD)

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