The Kansas Department of Aging and Disabilities reported that 5,347 people are on the waiting list to receive Comprehensive Intellectual and Developmental Disability Services, a Medicaid program that serves people whose intellectual disabilities severely reduce their ability to live independently.
The waiting list has been growing for 20 years, and some people have reported waiting up to 10 years after applying for services before receiving exemptions, which include adult day care, residential assistance and specialized in-home services.
The state pays for a certain number of people who are treated through the program, but about 9,000 people are currently enrolled, while the waiting list is more than 5,300. Disability exemptions are less stringent, but there is a long backlog of people waiting for services, with 2,452 people waiting, now 6,005.
The number of people waiting for services under the intellectual and developmental disability waiver has been growing for decades.
In her budget proposal, Gov. Laura Kelly proposed adding 250 slots to the current caseload for I/DD and PD waivers. The state Legislature, particularly House Minority Leader Dan Hawkins, has made the issue a priority and doubled the number of slots for each waivers to 500.
Governor Kelly rejected the $45.8 million cost of adding 500 slots and reduced the proposal to an increase of 250 slots, but the Legislature overturned that in Senate Bill 28, the state’s budget proposal.
“Under Governor Kelly’s Administration, the lists are now at an all-time high. By overriding the Governor’s veto, we are ensuring that these lists never reach such frightening levels again. As I have said before, we have much more work to do to eliminate IDD wait lists, and we will remain committed to doing so until these vulnerable individuals receive the services they need and deserve,” said Governor Hawkins after overriding the veto.
But the big impact may not be the additional funding the Legislature has pumped into the program after decades of not meeting demand, but the funding’s conditionality to cap the I/DD waiting list at 4,800 people.
In Kansas, capping wait lists counts as progress
Some disability rights activists say the cap marks a major step forward for the state to finally address wait lists for I/DD and PD waivers.
“Last year alone, 561 people applied for the IDD waiver,” said Rocky Nichols, executive director of the Disability Rights Center. “So if that trend continues this year, which is likely, can you imagine what would happen if there were 500 spots and 561 people applied? That would increase the wait list by 61 people.”
If that number rises above 4,800, as it is now, KDADS will return to the Legislature to request the promised additional funding. A KDADS spokesman said that request will likely be made in January when the Legislature resumes its regular session.
KDADS estimated it would need about $26.5 million to maintain the cap.
But the strict cap is encouraging to advocates like Nichols, who see it as a potential step toward reducing waiting lists in the long term.
“In the future, Congress could tweak the cap. They could say next year they want it to be 4,500, next year they want it to be 4,000, and that could actually have an effect,” Nichols said, “and before you know it, you have a path to actually eliminate it.”
But the path forward is not guaranteed, since Congress holds ultimate fiscal power, and while congressional leaders have said the waiting list is a priority, they have not committed to attaching additional conditions or reducing the list over time.
Imposing a cap in Kansas comes with potential challenges
Even if the state Legislature were to provide funding to the waitlist today to serve the entire population on the waitlist, the waitlist problem would not be solved overnight.KDADS has requested 500 additional slots on the waitlist based on current capacity for those serving those who qualify for I/DD and PD waivers.
“What happens is that people are expecting service, but the service providers don’t have the capacity, they have to wait to make an appointment, they have to wait to get service, and we certainly don’t want to be in that situation,” a KDADS spokesperson said.
Cottonwood in Lawrence and similar groups serving people with intellectual and physical disabilities have struggled to find workers at an affordable wage: Kansas has raised wages in the past few years, but workers still make an average of about $15 an hour.
Developing the workforce to support the exemptions has been a long-standing goal of the Kelly administration: Last year, she approved $51 million in bonuses for workers who provide services covered by the exemptions, sectors that typically have low wages and high turnover.
After three years of wage increases, the average hourly wage for frontline workers is still about $15.
KDADS has received grant funding to build provider capacity, is using American Rescue Plan Act funds for worker recruitment and retention bonuses, and is awaiting approval of a waiver amendment that will allow it to bolster its workforce.
The University of Kansas is conducting a survey to gauge the needs of people waiting for services and the number and geographic capacity of service providers in the state.
There is no silver bullet for problems that have been building up for years
I/DD waivers are called blanket waivers and cover a wide range of options, from those with relatively few support needs to those who require a high level of care. States have created more specific waivers, called community support waivers, that are targeted to those with fewer support needs.
The CS waiver focuses on nonresidential assistance and is aimed at programs helping people find and keep jobs, which won’t be available until at least 2026. But problems that have been building for decades could take years to resolve.
With legislation focused on CS exemptions and list reductions, activists are finding a way forward for the first time in years.
“This creates a pipeline between buying slots and setting the cap, and it gives us a way to actually eliminate the waiting list over the next few years,” Nichols said.
This article originally appeared in the Topeka Capital-Journal: Kansas caps waiting list for intellectual disability services at 4,800