Kansas disability waitlist study could take two years as needs mount

TOPEKA — Kansas health department officials said a study addressing the long wait times disabled Kansans face to receive government assistance will take two years to conduct.

The study will focus on physically and mentally disabled Kansans waiting to receive state resources, either through the Physical Disability Waiver Program or the Intellectual/Developmental Disability Waiver Program. 

The study is conducted by Kansas Department of Aging and Disability Services in partnership with the Kansas University Center on Developmental Disabilities, and is meant to find a more efficient waitlist process. Many have said the situation needs to be addressed immediately. During open testimony in late September to a Kansas committee on health care, several families said they were out of desperately needed resources. 

Tera Jackson, a Lansing resident, said her 8-year-old daughter was on the waitlist, and with changing insurance and increasing costs, her family struggled to provide her with everything she needed.

“Since we are on the IDD Waitlist, we are unable to get any help with getting something simple like diapers,” Jackson wrote in her submitted September testimony. “We have no guidance to get help with where we can even purchase some. Not having Medicaid coverage holds our child back and makes our parts of our home unsafe for her, because we cannot get the help we so desperately need.”

Across the state, 9,039 Kansas are enrolled in the I/DD waiver program according to August 2022 data. Approximately 4,814 Kansans are on a waitlist to be enrolled, with the longest wait time of an individual on the list being about a decade.

The Physical Disability Waiver Program provides support for Kansans between 16 and 65 who qualify for placement into a nursing facility because of physical disabilities. To meet the criteria, Kansans have to meet Social Security standards for disability and be eligible for Medicaid. About 2,414 people are waitlisted for that program, and 6,138 are enrolled, according to August data. The longest wait time for the program was two years, according to KDADS testimony. 

The Disability Rights Center of Kansas recommended that the state also do more to identify Kansans who have disabilities, telling the committee that the state had identified less than half of Kansans who have intellectual or developmental disabilities.

The center also recommended that funding be provided to relieve some people on the waitlist. The state could create 1,000 new slots in the I/DD waiver program, with the long-term goal of getting rid of the waiting list entirely.

Officials have said people on the waitlist should be better monitored, with a system created to understand their needs. The center said the system needed to address the immediate needs of Kansans on the waitlist.

“This process must be prioritized and finalized ASAP. This is low hanging-fruit can and must be addressed quickly,” the center’s submitted testimony read.