Kansans helping friends or family who have intellectual disabilities are burnt out. They miss work, sometimes get a new job entirely and regularly offer daily care while paying for that help from their own pockets, a University of Kansas study said. 

Those families appealed to the state for help, but the intellectual developmental disability, or IDD, waiver system has a 10-year waitlist. That program is supposed to help Kansans with intellectual disabilities — like autism — get services in their homes and communities. 

They wait so long that some age out of the list before getting help, and some die on the waitlist. 

Kansas has a plan to cut down that waitlist. Rep. Will Carpenter, an El Dorado Republican, said the state now knows what exactly to focus on because of the KU study. 

“We kind of got a little ahead of the game with the community support (program), not really knowing what services (were needed),” he said Tuesday in a Statehouse committee. “We found out that we’re pretty much on track for the services needed for that.”

The KU study found that:

• 86% of caregivers help for free. Nine percent had $1,000 in monthly caregiving expenses. 
• 84% of people on the waitlist need help in their community, 74% need help at home and 68% need help at work.
• 54% of people on the waitlist are in fair or poor health. Only 44% said they were in excellent health.
• 50% of people on the waitlist want to live with a parent or relative.
• 28% of caregivers with family or friends on the waitlist cared for one to three other people.
• 20% of families have no other caregiver available if they couldn’t provide support. Another 17% were not sure what would happen.

In Kansas social services terms, “waiver” actually means a child qualifies for special services like intense treatment to deal with everything from autism and intellectual disabilities to “serious emotional disturbances.” 

Evan Dean, associate director of community services at the Kansas University Center on Disabilities, worked on the study. 

He told lawmakers that more families provided hourly care than he realized and access to respite care for fed-up families is key. Just under one in four caregivers said the emotional and mental distress of helping is the most challenging part. The study said half of people had to use time off from work to care for someone, including 25% taking unpaid time off from work. 

The report has dozens of recommendations. It said that Kansas needs a more robust workforce so families aren’t the primary caregiver, that the state needs a system to pay family members as caregivers and that the new waiver should lift the financial assistance cap on the community support waiver, “which may not be sufficient to cover the cost of support for many on the waiver.” 

It isn’t clear what a new system would look like. 

The federal government needs to sign off on the final program, and approving a new waiver is a multiyear process. Its current goal is to serve as an exit ramp from the current 10-year waitlist. It might offer fewer services than the IDD waiver, but not every family needs the maximum assistance. 

The IDD waitlist had about 4,500 people on Oct. 10, and 60% of the people waiting are under 21.

Mike Burgess, director of policy and research at the Disability Rights Center of Kansas, said the waitlist could be eliminated in a few years if lawmakers continued to address issues. The study helped highlight areas the state can help families, he told lawmakers. 

“Keep your foot to the gas on the community supports waiver,” Burgess said.