Kansas Reflector: ‘Darkest of dark stains’: Kansas advocates call for funding of long-forsaken disability services

BY: RACHEL MIPRO - DECEMBER 18, 2023 9:00 AM

TOPEKA — Rocky Nichols, who for years has advocated for disabled Kansans to receive services, increasingly relates to the popular “Peanuts” comic.

Nichols used the analogy to describe attempts by him and other advocates to secure government action on the state’s long-stagnant wait lists for disability services.

“I kind of feel like Charlie Brown,” Nichols, executive director of the Disability Rights Center of Kansas, said. “I feel like the legislature and the governor, whoever they have been in the past, is Lucy on this issue. … Lucy is holding that ball. And we’re running at it, and then, ‘Good grief,’ the ball is pulled out of our way and we’re flat on our back.”

Nichols joined Sara Hart Weir, executive director of the Kansas Council on Developmental Disabilities, to talk about the issue during a recording of the Kansas Reflector podcast.

Kansans with intellectual or developmental disabilities are eligible for Medicaid-funded support waivers that cover a variety of needed services, such as in-home care. People who want to receive this assistance, known as intellectual and developmental disability waivers, are placed on a waiting list supervised by the Kansas Department for Aging and Disability Services.

But wait times can last more than 10 years, and more and more Kansans have been added to the slow-moving lists. The wait list for intellectual and developmental disability services is up to 5,235 people, according to November data, and the physical disability list has 2,484 waiting Kansans.

Kansas Reflector examined this issue earlier this year in the series “On the List.”

Weir said she wanted to see legislative action on the wait list in the upcoming legislative session.

“Enough with the finger pointing,” Weir said. “We have a $2.7 billion surplus in our budget here in the state of Kansas. We have $1.4 billion in a rainy day fund. We have a Democratic governor and a Republican Legislature. Let’s get together. Let’s roll up our sleeves. And let’s provide the adequate and necessary funding to start to reduce the wait list.”

Nichols pointed out that the long wait for services has been a problem for more than 20 years. The size of wait lists has varied over the years, depending on how much funding lawmakers have invested in the program. In 1997, no one was waiting for intellectual and developmental disability services. By 2000, the list was around 300.

Nichols, who was a state representative from 1992-2003, said there had been a lot more focus on resolving the wait list when he was in the Legislature.

“Even though we had small waiting lists, we fought like the dickens to reduce them. … Whenever that waiting list started to creep up, we took it personally and we did something about it and we appropriated funds,” Nichols said.

He said the Legislature has only provided funding once in the past eight years to reduce wait times, resulting in 150 people newly enrolled in services, less than 4% of those waiting for services at the time. Nichols said the last time a governor recommended in their budget to increase funding for wait list reduction was Sam Brownback, back in fiscal year 2016.

“The problem is, everything has changed. … It really has become the darkest of dark stains on the public policy landscape in the state of Kansas,” Nichols said.

The two are still optimistic about potential changes, following discussion with KDADS and members of Gov. Laura Kelly’s staff. 

“We’ve got to have more action, more accountability, and more forward progress to reduce this,” Weir said. “Now’s the time.”