Kansans with disabilities struggle with decade-plus wait for state aid

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TOPEKA — Some Kansans with disabilities are having to wait more than 10 years for government help due to a “monumental problem” with backlogged service requests. 

To receive Medicaid-funded support waivers from the state, people with intellectual or developmental disabilities are placed on a waiting list supervised by the Kansas Department for Aging and Disability Services.

The support waivers cover a variety of needs, such as in-home care and tuition, but yearslong wait times have led to desperation for some Kansas families

In January, 4,813 Kansans were on the waiting list for the program, marking a 19.2% increase from the previous two years, according to the Kansas Council on Developmental Disabilities. The organization said wait times were about a decade. 

According to June KDADS data, 5,100 people are now on the waiting  list for the program. Rocky Nichols, executive director of the Disability Rights Center of Kansas, said people are currently looking at a wait time of more than 12 years. 

“The wait list was a terrible problem and now it’s a monumental problem for the state of Kansas,” Nichols said. “The wait list is our No. 1 priority, but in spite of that, there’s been no movement on it for years.” 

The waitlist issue has been long documented. 

Nichols’ organization started up the “End the Wait” campaign in 2011, with a full-time staff member dedicated to the problem, but grant funding ran out in 2014. Nichols said he and other activists have continued their efforts to end the waitlist since then, and plan on redoubling their efforts and addressing the issue again. 

But without legislative support and funding, the problem is likely to continue. Other programs face similar wait times, with 2,332 people waiting for the Physical Disability Waiver. Nichols said with more people on the list and longer wait times, the problem has gone from bad to worse. 

KDADS has made some steps with opening up resources for Kansans with disabilities. The agency announced the reopening of the agency’s Shared Living Program on Tuesday, aimed at promoting independence and socializing for IDD adults, with new providers starting the licensing process in January.  

The program allows people with disabilities to live in homes with caregivers or other families, as part of a Home and Community-Based Services living option. 

“The process to re-introduce this program to Kansans with IDD has been an important one, and we are grateful to and want to acknowledge those who continuously advocated for this program across the state and for those who participated in the creation of the manual,” said KDADS secretary Laura Howard. 

Nichols said the program was a good step, but the wait list had to be made more of a priority.

“It’s a little like the frog in the water slowly coming to a boil,” Nichols said. “The problem is the water’s been boiling for several years now.”

Kansas Reflector is part of States Newsroom, a network of news bureaus supported by grants and a coalition of donors as a 501c(3) public charity. Kansas Reflector maintains editorial independence. Contact Editor Sherman Smith for questions: info@kansasreflector.com. Follow Kansas Reflector on Facebook and Twitter.

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