Become a Kansas Change Agent Advocate Today!
Join Forces by Advocating Alongside the Kansas Council on Developmental Disabilities (KCDD) for Kansans with IDD
About KCDD
KCDD is a statewide organization dedicated to empowering individuals with intellectual and developmental disabilities (IDD), family members and caregivers and their families to lead systems change, build capacity, and advocate for inclusive, integrated, accessible communities where everyone belongs and thrives. KCDD actively advocates for the IDD community in Topeka and in Washington, DC.
Through KCDD’s comprehensive five-year plan, we are working to expand our network to create new IDD leaders and advocates from across Kansas to help shape the future of supports, services and funding for the IDD community across the Sunflower State.
Let’s Make Change for the IDD Community TODAY!
In 2024, KCDD launched a new program called the KCDD Change Agent Program (KCDD-CAP). The primary purpose of this new program is to equip and empower self-advocates, family members and caregivers with the tools needed to effectively utilize their lived experiences to improve the lives of all Kansans with IDD. KCDD-CAP leaders will work alongside the KCDD team to lead systems change, build capacity, and advocate for inclusive, integrated, accessible communities where everyone belongs and thrives.
Participants in the KCDD-CAP serve as volunteer advocates committed to taking part in the democratic process and serving as liaisons between KCDD and their Kansas state senators and representatives. The overarching goal of KCDD-CAP is to build long-lasting relationships with decision-makers in their communities to make positive change for our IDD community in Kansas.
KEY PROGRAM OBJECTIVES
- Strengthen and organize our KCDD statewide grassroots advocacy network to make our voices heard in Topeka
- Partner with key policy makers and state officials to advance policies and procedures that improve the lives of Kansans with IDDD
- Engage advocates to positively promote the mission and vision of the KCDD
EXPECTATIONS OF KCDD-CAP PARTICIPANTS
- Complete KCDD’s Advocacy 101 training curriculum (in person or virtual)
- Commit to 2-4 hours per month of KCDD advocacy work for a 12 month period
- Help recruit new KCDD-CAP participants (i.e., self-advocates and families) from across the state
- Provide in-person or written testimony at Kansas Capitol helping to support KCDD’s key legislative priorities and agenda items
- Meet with your State Senator and State Representative, as needed
FOR MORE INFORMATION OR TO JOIN KCDD-CAP, PLEASE CONTACT KCDD at This email address is being protected from spambots. You need JavaScript enabled to view it.
“ELIMINATE THE WAIT”
BOLD LEADERSHIP & ACTION NEEDED IN 2024 KANSAS LEGISLATIVE SESSION
The waitlists for the Intellectual/Developmental Disability (IDD) and the Physical Disability (PD) Home & Community Based Services (HCBS) Medicaid Waiver programs have reached a crisis point. Since KanCare launched in 2013, the IDD and PD Waitlists have gone from bad to worse to utterly out of control in Kansas. In Kansas, these HCBS services are critically important to individuals with disabilities’ daily lives. HCBS Waiver services are separate from Medicaid healthcare plans, and include the following services:
- assistive services
- adult day supports
- financial management services
- medical-alert rental
- overnight respite
- personal care services
- residential supports for adults and children
- enhanced care services
- specialized medical care
- supported employment
- supportive home care
- wellness monitoring
Due to Kansas’ historically long HCBS waitlists, people with disabilities are waiting longer than ever to receive life-affirming services. The waitlist is so long, many Kansans only move off the waitlist and onto an HCBS Waiver after a parent or family member dies; and a bureaucrat in Topeka has decided their crisis is bad enough to qualify for a crisis exception.
Bottom Line
Over the last 5 years, the IDD & PD waitlists have been largely ignored. Both waitlists are in crisis because the Governor and Kansas Legislature have NOT increased funding to reduce the record-high waitlists.
- Governor Kelly has never proposed a funding increase to HCBS waitlists during her entire tenure.
- In the last five years, the Kansas Legislature has provided one small increase in funding to reduce the HCBS waitlists (As the graphic above shows, HCBS Waitlist funding received $6 million compared to $234.2 million for provider rates in the last 5 years).
- Kansas has a large, historic Budget Surplus of $2.7 Billion & a Rainy Day Fund of $1.4 Billion. Now is the time to make significant investments to finally Eliminate the Wait for HCBS Waivers, which will result in far better outcomes for Kansans with disabilities to have better access to community supports, workforce development opportunities and live longer, healthier lives.
2024 INVESTMENT NEEDED BY KS LEGISLATURE & GOVERNOR
For FY 2025, we are respectfully requesting that the Kansas Legislature & Governor Kelly appropriate funding to reduce the IDD and PD Waiver Waitlists each by 20%. Specifically, the legislature needs to appropriate $29,288,776 SGF ($75,916,684 all funds) to add 1,100 slots on the IDD waiver and $4,447,880 SGF ( $11,528,980 all funds) to add 500 slots on the PD waiver.
FACT SHEET
1) Historic Underfunding of the Waitlists by Kansas Governors & Kansas Legislature:
- Governor Kelly has never proposed any funding increase to reduce HCBS waitlists since taking office.
- Governor Brownback was the last Kansas Governor to propose a small increase in the HCBS Waitlist which happened in FY 2016.
- In the last five years, the Kansas Legislature has provided:
- IDD Waitlist: one small increase of $3 million for the IDD Waitlist compared to five years of consecutive funding for IDD HCBS provider rates which amount to a total $234.2 million, nearly 80 times more increases for provider rates than IDD waitlist slots.
- PD Waitlist: A large similar disparity on the PD Waiver, which only received $3 million vs. $22.5 million for PD Waiver provider rates over the last 5 years.
2) The IDD & PD Waitlists have reached horrific, all-time historic highs in Kansas:
- Before KanCare (1997-2012), the HCBS waitlists were much smaller.
- When KanCare went into effect in 2013, Kansans with disabilities were promised that switching to Managed Care system would save a significant amount of money, and those savings would be targeted to eliminate the HCBS waitlists. This promise never happened, and waitlists have only worsened.
- In early 2024, the current Kansas IDD and PD Waitlists reached an all-time high:
- IDD Waiver Waitlist = 5,235
- PD Waiver Waitlist = 2,484
3) HCBS Provider Rates Support vs. Funding for IDD & PD Waitlists: Provider Rates directly impact disability service agencies, leadership and staff. Whereas, waitlist funding supports the individual with a disability and their family.
- Waitlist funding has an immediate impact on individuals and families in Kansas by reducing waitlists and providing necessary services and supports.
- Past provider rate increases lacked restrictions to guarantee investment in the direct support professional workforce.
- We support provider rate increases, but the focus now must be on waitlists.
4) The Community Supports Waiver (CSW) is a small step but it alone will not solve the long-term needs for the IDD Community in Kansas:
- The proposed Kansas CSW is a “Waiver-lite” option with limited support that will not meet the needs of all Kansans with IDD. According to KDADS, the earliest a CSW could be offered in Kansas is late 2026.
- A CSW alone will not even come close to eliminating the IDD Waitlist. Only a combination of funding significant new slots and the CSW will effectively Eliminate the Wait for HCBS.
Contact Us
Sara Hart Weir, Executive Director, Kansas Council on Developmental Disabilities 913-329-3614 This email address is being protected from spambots. You need JavaScript enabled to view it.
Mike Burgess, Director of Policy & Outreach, Disability Rights Center of Kansas 785-845-7245 This email address is being protected from spambots. You need JavaScript enabled to view it.
View/Download the Policy Brief
The Council developed a policy brief in partnership with the Disability Rights Center of Kansas.
Download the Eliminate the Wait Policy Brief
In the fall of 2023, KCDD launched a first of its kind statewide Kansas Intellectual & Developmental Disabilities (I/DD) Health Equity and Outcomes Coalition, with the goal of convening self-advocates, families, and caregivers as well as Kansas state agencies and departments, healthcare professionals, researchers and providers from across Kansas. The coalition, through a series of workgroups, is developing an action-oriented blueprint aimed at ensuring our healthcare systems and partners in Kansas realize health equity for our I/DD population across Kansas. This coalition provides a new and innovative platform of stakeholder engagement and collaboration, advocacy and systems change to:
- Improve the quality of life and increase life expectancy of all Kansans with I/DD
- Address issues related to access to improving medical care access, expertise and training across all healthcare professionals and speciality areas
- Address access issues as well as supports, services and disability-related benefits across Kansas’ rural, urban and suburban communities
- Address disparities in health and healthcare delivery across our state for the entire IDD population
- Enhance the workforce and establish a formal career ladder in Kansas for professionals, direct support providers (DSP), healthcare providers, etc. who support and work with the IDD community
Gallery
Health Equity & Outcomes Kickoff, Fall 2023
|
|
 |
 |
 |
Focus Areas
The coalition has four active workgroups that meet on a monthly basis to provide input and feedback on how to improve health systems for individuals with I/DD, their families, and healthcare providers. The workgroups include:
Pediatric to Adult Clinical Care
The goal of this workgroup is to improve care coordination from pediatric to adult clinical care regardless of rural, urban, and suburban communities, increase the use of ADA accessible hospital beds, and simplify forms and administrative processes.
Inclusive Research
The goal of this workgroup is to promote research tools and increase I/DD participation across the spectrum, attract more federal dollars to support Kansas research, and increase Autism research.
Aging and the Caregiving Crisis
The goal of this workgroup is to enhance resources for caregivers and guardians to navigate the system, create opportunities for aging in place, equity in retirements and quality/new housing solutions, Increase capacity, flexibility in the I/DD workforce and service offerings and training for DSP, family caregivers, etc.
Behavioral Health
The goal of this workgroup is to work with state agencies to develop a 988 Crisis Hotline Training for callers with IDD, develop an IDD Behavioral Health Toolkit, including nonverbal training materials, and increase mental health supports for individuals with IDD.
Kansas Council on Developmental Disabilities’ (KCDD) Health Equity and Outcomes Coalition Membership
- Advent Health
- Aetna Better Health
- Alliance Rehab and Medical Equipment
- Amgen
- Assured Trust Company
- Autism Society - The Heartland
- Bert Nash Center
- CareSource
- Catholic Charities KC-SJ
- Children's Mercy Hospital Kansas City
- Community Health Council of Wyandotte
- Developmental Services of Northwest Kansas, Inc. (DSNWK)
- Down Syndrome Innovations
- The Golden Scoop
- Institute for Advancing Medical Innovation
- InterHab
- Johnson County Developmental Supports
- Kansas Center for Autism Research and Training
- Kansas City Hospice & Palliative Care
- Kansas Department for Children and Families
- Kansas Family Support Center
- Kansas LEND, University of Kansas Medical Center
- Kansas State Physician Assistance Program
- KU Center on Developmental Disabilities
- KUMC Girls Night Out Program
- L'Arche Heartland
- Onward Kansans
- Optum Care
- Oral Health Kansas, Inc.
- Raise Health Innovations
- Rush University Dept of Community, Systems and Mental Health Nursing and PATHPWIDD
- Sedgwick County Department of Aging and Disabilities
- Sedgwick County Developmental Disability Organization
- Special Needs Assured
- Special Olympics Kansas
- Sunflower health plan
- UnitedHealthcare Community Plan of Kansas
- University of Kansas Medical Center (UKMC)
- University of Kansas School of Nursing
- We Care and Connect
- Whole Story Planning
For more information or to get involved, contact Allyson Mccain at This email address is being protected from spambots. You need JavaScript enabled to view it..
BIPARTISAN COALITION LAUNCHES CAMPAIGN TO HELP INDIVIDUALS WITH INTELLECTUAL & DEVELOPMENTAL DISABILITIES ON KANSAS WAITLIST
Kansas Department for Aging & Disability Services, the Kansas State Treasurer and the Kansas Council on Developmental Disabilities will team up to promote Kansas ABLE Accounts to IDD waitlist
November 29, 2023
LAWRENCE—Kansas State Treasurer Steven Johnson, Kansas Department for Aging and Disability Services (KDADS) Secretary Laura Howard and Kansas Council on Developmental Disabilities (KCDD) Executive Director Sara Hart Weir announced a formal partnership among their agencies to enhance awareness of the Kansas ABLE Savings Program for those individuals within the intellectual and developmental disability (IDD) community who are impacted by the IDD waitlist in Kansas.
Through the partnership, KDADS, the State Treasurer’s Office and KCDD will spearhead new educational resources for self-advocates, family members and caregivers; and host a series of webinars for disability stakeholders, including Kansas providers, Community Developmental Disability Organizations, managed care organizations and disability organizations. The group will also conduct a Kansas ABLE Roadshow across the state in 2024. KCDD is supporting these outreach efforts with a grant to the State Treasurer’s Office.
More than 5,100 individuals with IDD are currently on the waitlist, waiting approximately 10 years for services, in Kansas. Working together, the coalition members recognized that these individuals with IDD as well as their family members and caregivers, need resources, support and services while they wait for a Home and Community Based Service (HCBS) waiver.
The Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act of 2014 created a savings and spending tool designed specifically for people with disabilities. Under the ABLE Act, “ABLE accounts” allow individuals to spend on disability qualified expenses, save, and invest money while helping them to protect benefits like Medicaid and SSI. The Kansas ABLE program currently has 1,821 open accounts with a total of $16.9 million in assets under management.
The announcement was made at the Dole Institute of Politics at the University of Kansas, in recognition of the late Senator Bob Dole’s legacy and service to families in the IDD community. In addition to the press conference announcing the partnership, Johnson, Howard and Weir also facilitated a roundtable discussion with legislators, community organizations and stakeholders in the IDD community.
Watch the video of the press conference
###
About KDADS
KDADS administers services to older adults; administers behavioral health, addiction and prevention programs; manages the four state hospitals and institutions; administers the state’s home- and community-based services waiver programs under KanCare, the state's Medicaid program; and directs health occupations credentialing. The agency’s mission is to Protect Kansans. Promote Recovery. Support Self-Sufficiency.
About STO
The Office of the Kansas State Treasurer ensures safe and efficient operation of state government through effective banking, investment and cash management. As the administrator of the Kansas ABLE Savings program, the office serves the disability community by assisting in removing limits from what people living with a disability can do. ABLE savings accounts allow Kansans the opportunity to save for their future without losing their eligibility for certain assistance programs, like SSI and Medicaid. More information on ABLE accounts is available at http://kansascash.ks.gov/
About KCDD
KCDD’s mission is to empower individuals with I/DD and their families to lead systems change, build capacity, and advocate for inclusive, integrated, accessible communities where everyone belongs and thrives. KCDD serves people with intellectual and developmental disabilities through advocacy, public policy, and education. You can learn more by visiting www.kcdd.org.
For More Information:
KDADS:
Cara Sloan-Ramos
785-296-0807
This email address is being protected from spambots. You need JavaScript enabled to view it.
KCDD:
Allyson McCain
469-236-5025
This email address is being protected from spambots. You need JavaScript enabled to view it.
STO:
Clint Blaes
785-296-3538
This email address is being protected from spambots. You need JavaScript enabled to view it.
