Kansas committee hears 'IDD 101' briefing on services, waiting list and workforce challenges

Matt Fletcher, executive director of InterHab, told the Kansas House Health and Human Services Committee that the presentation was intended as an "IDD 101" for legislators and staff to level-set on intellectual and developmental disabilities and the service system that supports Kansans.

The briefing covered the history of institutional care in Kansas, the current Home and Community-Based Services (HCBS) waiver structure, the role of community developmental disability organizations (CDDOs), examples of daily supports from providers and the system's primary challenges: a multi-thousand-person waiting list, difficulty recruiting and retaining direct support professionals, increasing behavioral health needs and federal compliance pressures.

The context: why this briefing matters

Committee members were given both historical context and current system figures to show how policy choices affect costs and community outcomes. Speakers emphasized that serving people in community settings is far less costly than institutional care and stressed that recent legislative investments have reduced the waiting list but that a strategic, predictable funding approach is still needed.

Most of the witnesses credited Kansas's move from large institutions to community-based supports with improving quality of life for people with IDD, but warned the state must sustain funding and workforce investments to avoid backsliding.

Key facts and figures

- InterHab, KDADS and provider witnesses said roughly 9,000 Kansas residents receive services through the IDD waiver; KDADS reported 9,419 waiver enrollees and a waiting list of 4,370 individuals. - InterHab and KDADS witnesses said the average annual cost of serving someone on the HCBS waiver is about $62,000, while the average cost per person in a state institution is roughly $268,000. - KDADS described a proposed Community Support Waiver (CSW) intended to offer a lower-cost set of services and that the CSW would be capped at $20,000 per participant; KDADS said the state's comprehensive IDD waiver averages about $70,000 per participant. - KDADS reported total FY2024 IDD waiver funding of $598,115,479, of which the state contributed $229,359,000. - Providers and KDADS said prior ARPA (American Rescue Plan Act) funding included about $51 million distributed to community providers for recruitment and retention of direct support professionals (DSPs). - InterHab and provider witnesses estimated average DSP wages around $15 per hour for many member organizations, with local variation.

What witnesses described

Matt Fletcher (InterHab) summarized Kansas's history of institutional care and legal reforms, noting the Kansas Developmental Disabilities Reform Act and constitutional language dating to the 19th century that shaped the state's early approach. He described how institutions peaked at about 3,000 residents mid-century and have since declined to roughly 300 residents in the state hospitals that remain.

Samantha Snow, who identified herself as a Kansan with disabilities, told the committee about her path to employment and independence and said, "I am 30, maybe a little flirty, but most importantly, I am thriving," crediting job supports and community services for her progress.

Laurie Feldkamp, president and CEO of Big Lakes Developmental Services, gave day-in-the-life examples of three individuals served by her agency and described a spectrum of residential, day, employment and nursing supports. She noted providers fund and build some group homes locally and that some high-cost supports (adaptive equipment, communication devices such as Dynavox) can cost as much as a used car.

Mika Hefner of the Disability Planning Organization of Kansas explained the CDDO network (27 CDDOs), their statutory role as single points of entry and their two-step eligibility process (program eligibility under the state statute and functional eligibility to determine waiver enrollment).

KDADS commissioner Michelle Hayden described the administrative steps required to design, request federal approval (CMS) for, and implement a new waiver and warned that draft legislative proposals requiring additional legislative review of waiver changes could add time to that process. Hayden said Kansas's waiver population spans ages 5 to 105 and reiterated the workforce and rural access gaps.

Mike Burgess of Disability Rights Center Kansas emphasized waiting-list dynamics, historical funding rhythms and recommended a multi-part strategy combining additional comprehensive-waiver slots, implementation of the Community Support Waiver and improved waiting-list transparency and prioritization.

Discussion and directions

Committee members asked about: the definition of a waiver, regional comparisons with nearby states, the composition and age distribution of the waiting list, whether people sign up preemptively for future needs, and how behavioral health gaps intersect with IDD supports.

KDADS and InterHab said work is already underway: KDADS is developing the Community Support Waiver with stakeholder input and a technical advisory group; KDADS said it targets a July 1 implementation of a new functional assessment instrument (the interRAI-based Medicaid functional eligibility instrument) to replace a deficit-focused tool; InterHab and KDADS reported new work groups with providers and families to refine federal responses on conflict-of-interest and other CMS concerns.

No formal committee action or vote was recorded during the briefing. Witnesses asked for continued legislative attention to stable, predictable funding, workforce compensation and expansion of supported employment and behavioral health partnerships.

Why it matters going forward

Witnesses framed the problem as cross-system: inadequate DSP wages and turnover limit provider capacity, which constrains how many people can be brought off the waiting list even when funds are available. Several speakers argued that stabilizing the workforce should be a top priority because staffing capacity underpins expansion of services, rural access and supported employment.

KDADS and providers also raised federal uncertainty (possible Medicaid funding changes under federal budget processes) and CMS compliance requirements as risks that could affect program design, provider operations and the state's ability to implement the Community Support Waiver on the timeline stakeholders seek.

Ending note

Speakers and committee members characterized the briefing as an "education" session for lawmakers new to these issues and asked KDADS, InterHab and provider groups to return with follow-up data and implementation proposals. KDADS said it will continue public town halls and technical advisory meetings as it finalizes the Community Support Waiver and related administrative changes.