Dee Miller has to make an “awful” decision.

The Lawrence resident’s disabled husband of 57 years needs more intensive care than an in-home service is able to provide. But profit-driven assisted living facilities in the area will only accept him if he can pay an estimated $11,000 per month out of pocket for two years, Miller said. As a Medicaid patient, the facilities would place him on an indefinite waiting list.

She would have to sell their home to cover the cost and find a place for herself to live.

“What is an average person supposed to do?” Miller asked last month at a forum hosted by Kansas Advocates for Better Care.

In an interview, Miller said her husband is paraplegic and suffers severe neurological pain. The couple are 78 and 79 years old.

“Many people all over this area that you know are going to be running into the same thing,” she said.

She added: “It’s just a really bad situation.”

Miller’s situation is emblematic of broader concerns outlined by panelists during the forum. They described a long-term care industry geared toward maximizing profits without regard for human suffering, and a Republican-controlled Legislature unwilling to interfere with “free market” greed.

Janis DeBoer, a former deputy secretary of the Kansas Department for Aging and Disability Services, joined Camille Russell, a former Kansas long-term care ombudswoman, and Kansas Rep. Susan Concannon, a Beloit Republican who declined to seek reelection this year after serving six terms.

DeBoer, whose career in long-term care spanned three decades, said it has always been a challenge to find quality care in nursing homes in Kansas.

“Staffing levels have always been difficult. Pay has been too low. The competition sometimes has been too great,” DeBoer said. “The fact that nobody wants your business, period. I mean, nobody really wants to go to a nursing facility, and yet you offer it because you can make money at it. Let’s just be frank. You can make plenty of money in the nursing facility business as a general rule.”

Russell pointed to a report on federal ratings that showed 80 out of 300 nursing homes in Kansas are considered “problem facilities.” That number was “generous,” she said, meaning there are problems with many more.

If you looked at customer satisfaction, Russell said, few would say their nursing home was good.

She said an estimated 13,000 early deaths per year could be attributed to inadequate staffing in nursing homes nationwide. A new rule from President Joe Biden’s administration would impose higher staffing requirements within three years. That means nearly 40,000 people could die before the requirement is in place, she said. And many more will suffer.

“What about the multitude of people who are living in misery, with abuse and neglect of not having adequate staffing?” Russell said. “These people are making money. This is a profit center, and they are making profits while their customers are in misery, being abused, neglected and dying.”

Kansas Attorney General Kris Kobach joined 19 other states in a lawsuit challenging the new rule. The lawsuit claims new staffing requirements pose “an existential threat to the nursing home industry as many nursing homes that are already struggling will have no choice but to go out of business.”

Russell said the same companies that claim they can’t find or afford more staff seem to have no trouble finding staff when they open new facilities. Providers aren’t interested in increasing the workforce, she said, because staffing is their biggest expense: “They won’t make as much money.”

Gov. Laura Kelly moved to replace Russell as the long-term care ombudswoman earlier this year with Haely Ordoyne. Dan Goodman, executive director of Kansas Advocates for Better Care, said in an interview that the appointment raises concerns about conflicts of interest.

Ordoyne owned a Washington, Kansas, nursing home from 2009 to December 2023, led an industry lobbying group and continues to work as a consultant for senior care businesses.

“You start to wonder, who’s with us here on protecting older Kansans?” Goodman said.

Goodman said the Legislature could address some of the concerns outlined during the forum by taking action to increase staffing at long-term care facilities; limit the use of anti-psychotic medication, which facilities use despite health concerns to subdue patients so less attention is required; and make it easier to coordinate in-home services and avoid premature institutionalization.

During the forum, Concannon said she had tried and failed to pass regulations during her 12 years in office. When House Speaker Dan Hawkins eliminated the senior care committee she chaired, he didn’t even tell her until the day it was announced, she said.

“There’s just not a lot of appetite in our Republican-controlled Legislature to do anything that would be restrictive and what they would call not the free market,” Concannon said. “And I’m back here screaming, ‘This is not a free market system!’ There’s no free market really in health care.”

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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