Kansas Stories: Shelley

May 2025

Shelley lives in Lawrence and grew up in South Central Kansas. After her three children left home, she and her husband, Kirk, moved to Lawrence in 2011 to enjoy their golden years. Before retiring in 2007, Kirk worked for the U.S. Department of Agriculture and Shelley worked in medical billing. Shelly and Kirk celebrated their 45th wedding anniversary on April 25, 2025.

In 2014, Shelley noticed Kirk was having significant issues with confusion and memory. Over time, his condition worsened. He experienced several hallucinations, insomnia, and late-night wanderings. Shelley decided to retire early in 2018 to be able to care for Kirk in their home, but his condition worsened. Shelley realized she could not safely care for him in their home anymore, so she made the difficult decision to place him in a memory care home.

For the first year Shelley paid $7,250 each month for Kirk’s care, depleting their savings. Shelley and Kirk rely on his federal retirement and small social security benefits for income. Eventually she was able to get him approved for Medicaid.

With looming cuts to Medicaid in Washington, DC, Shelley is concerned about being able to afford to stay in her home while also paying for Kirk’s care.

“It’s scary to feel like, ‘Am I going to be able to maintain and stay in my house, while also keeping my husband in his housing…?'” she said.

Kirk is currently in a care home in Baldwin City, which is about 16 miles away from Lawrence. Shelley would have preferred to have him closer to her, but there were no openings in Lawrence facilities that would accept Medicaid and meet his needs.

In addition to care for her husband, Shelley is also responsible for ensuring her sister receives proper care.

Shelley’s older sister, Rita, was diagnosed with paranoid schizophrenia in her late teens. Because their mother could no longer care for Rita, Shelley became her legal guardian and conservator in 2008. Rita is currently thriving in a group home in Haviland, a small Kansas town between Wichita and Dodge City.

Finding this home for Rita, where her needs are met and she can prosper, was challenging. Haviland is a considerable distance from Lawrence, which can make visits difficult, especially during inclement weather. There are limited options in Kansas for individuals like Rita who require long-term care and support for mental health conditions, and there can be long waitlists for placements in suitable facilities.

Shelley is concerned that her sister may also lose access to necessary care if Medicaid funding is cut.

“There’s just no way she can survive outside of that care facility,” Shelley said.

In 2019, Medicaid covered 10,304 nursing home residents in Kansas. Shelley is very concerned about the $880 billion in cuts to Medicaid proposed in Congress.

Shelley does not know how she would afford to care for her husband and her sister without Medicaid. Her only option would be to bring them home, which she knows would be very difficult not only for her, but also for her husband and sister. Her house has many stairs, which would be a problem for Kirk, who uses a walker. Caring for Rita, who has complex mental illness, would also be challenging. Additionally, Shelley has had three back surgeries and would not be able to lift Kirk or Rita if they fell.

“I’m extremely worried that if cuts come, I won’t be able to afford to keep either one of them where they are,” she said, “and I don’t know how I would care for them in our home.”

She has heard that some facilities may be forced to close if Medicaid funding is cut, which would leave her with even fewer options for care. Cuts to Medicaid could strain Kansas’s health care system, potentially leading to hospital and nursing home closures. More than half of Kansas’s nursing home residents rely on Medicaid to pay for care.

For Shelley, the proposed cuts to Medicaid are not just a policy issue; they are a threat to her family’s well-being and the lives of her husband and sister.