TOPEKA, Kan. (Kansas Reflector) — Take a moment to close your eyes and think about every step required to complete whatever work or tasks you had to complete today.
You may have had some breakfast, walked out to your car, drove to work or the store or to the Capitol building in Topeka and then went out to dinner. All these actions were probably done independently, and many of these activities may feel routine.
Askia Adams, 44, was born with cerebral palsy, and Friday he told legislators on the Bob Bethell Joint Committee on Home and Community Based Services and KanCare Oversight to consider their independence in performing daily tasks. He performs the same activities, but with some assistance.
He lives in his own home in Kansas City, works a job he loves and has held for more than five years, attends church, serves on several state and national disability advisory boards and, in May, he will graduate with his associate degree in accounting — all with the help of a personal care provider.
“I needed caregivers around the clock for simple things such as bathing, cooking and dressing, things the majority of us take for granted,” Adams said. “The problem is simple: No matter how qualified my caregivers are, because of the state reimbursement rates they will never be paid what they can make if they work in a hospital.”
However, Adams, like many other Kansans with disabilities, is facing an uphill battle in finding caregivers who are willing to work for the state Medicaid reimbursement rate. While stakeholders and advocates say they have a willing population of workers, the pay simply is not enough to live off.
After moving out of his parents’ house, Adams’ first caregiver made about $12 to $14 an hour. That is, until 2002, when the state slashed the Medicaid rate. The agency she worked for cut her pay, forcing his caregiver to leave for a better-paying job.
His second caregiver faced a similar situation and, despite developing a familial bond with Adams and picking up a job, could not survive on the wages she was paid.
Now Adams faces losing another caregiver, and he told legislators he has heard the same stories from others across the state.
“It is time to get caregivers back the money Kansas stole from them over 20 years ago,” Adams said.
Audrey Schremmer, a representative of the Kansas Association of Centers for Independent Living, said a survey conducted by the association showed 31% of consumers reported they do not have enough workers to cover their hours and 51% of workers were related to the person they were giving care for.
Of the providers at centers around the state, 91% want to stay in their job.
“They can see themselves doing this next year, but the one exception is wages,” Schremmer said.
Schremmer also told legislators of a growing number of incidents where caregivers do not show up or quit, leaving Kansans with disabilities who need assistance in vulnerable situations.
Brad Linnenkamp said he has found himself in this position. He also has cerebral palsy, but unlike Adams, he does not have enough attendant care to come in and help him with daily activities like showering or going to the restroom all the time.
“There’s times that I have to end up doing it myself and I’ve had to add instances to where I fall,” Linnenkamp said. “I’ve had to call the paramedics to come in and help me to get back into my chair or back into my bed, wherever that may be.”
Linnenkamp said sometimes he may have a caregiver who lasts a few days before a new one arrives. He urged legislators to remedy the wage issue so that he could continue living in his own home.
Matt Fletcher, director of InterHab, said the turnover rate of their member caregivers in December 2021 and January 2022 was 48.43%, above the national average of 44%. He said the Legislature’s decision to include a 7% increase for provider rates in the budget last year was appreciated, but it only served as a lifeline, often leaving them to tap into other funding sources to address wage and workforce shortcomings.
Fletcher said raising the rate to even $15 an hour would make a substantial difference in the short term.
“It’s not going to work for every provider, but if we could find a funding influx that said the majority of providers out there, we’re going to be able to get to a $15 an hour wage, which would go incredibly far in staunching the bleeding,” Fletcher said.
Long-term solutions would require collaborative efforts to create a career lattice incorporating better wages, benefits, education opportunities and more to make the field more attractive to workers, he said. For now, however, Fletcher said something had to be done to stop the hemorrhaging of workers.
Some who testified were doubtful lawmakers would do anything to remedy the solution.
“I’ve been following the process of this committee for years, and for all the years I’ve been following it, I haven’t witnessed much progress,” said Vicki DeStefano. “Maybe this is just a forum for us to get on and err complaints.”
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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