By TIM CARPENTER
Kansas Reflector
TOPEKA — Early-onset Alzheimer’s disease led to rancher Charles Imthurn’s placement in a Kansas assisted living facility and it was dementia that prompted his involuntary discharge.
Imthurn’s wife, Rachel, said the facility providing care for her husband and five other Alzheimer’s patients with issues related to memory, thinking and behavior decided without warning to get out of that line of business. The facility fired nursing staff and told the residents to get out, she said. No 30-day grace period. No physician’s order. No explanation.
“It was critical that he stay there and never move again, because Alzheimer’s patients do not move well,” she said in testimony during 2021 to a Kansas House committee. “It is called transfer trauma, and it cost Charlie his life. He died nine days after being evicted.”
Imthurn, of Maple Hill, reported the 2011 incident to the Kansas Department for Aging and Disability Services, which conducted an inquiry but took no action. She contacted lawyers and was told no case could be made. She notified the Kansas attorney general’s office, but was informed state law didn’t forbid the involuntary discharge.
Here’s why: Kansas nursing homes operating under federal law must grant a person the right to appeal an involuntary discharge. Kansas assisted living facilities, however, offer residential support and services not directly covered by Medicaid or Medicare. These facilities are bound to licensing requirements set by the state, which hasn’t established the right to appeal involuntary discharges.
Imthurn and a collection of organizations led by the Alzheimer’s Association in Kansas are pressing for change with House Bill 2004. The legislation, known as “Charlie’s Bill,” would require an assisted living facility to give notice and a reason for the forced transfer. It would create the right to a state administrative appeal for a person living at an adult care facility.
“It’s kind of amazing,” said Jamie Gideon, who represents the Kansas and national Alzheimer’s associations at the Capitol. “People basically being dripped dropped off a hotels, at homeless shelters.”
In 2020, an estimated 55,000 Kansans were living with Alzheimer’s Disease. That number is expected to increase by 12% by 2025.
Linda MowBray, president of the Kansas Health Care Association and Kansas Center for Assisted Living, said during testimony last year that an appeals process leading to a requirement that a facility retain or readmit a resident they don’t believe they’re capable of serving would be wrong “for the resident, the staff and potentially for the other residents.”
“Appeal after appeal could drag on for months. It would be irresponsible with the potential for grave consequences for a community to attempt to care for someone whose needs are clearly outside of the services they can provide,” MowBray said.
It’s not clear what the 2022 Legislature intends to do with Charlie’s Bill or two other pieces of legislation sought by the Alzheimer’s Association.
The organization is championing House Bill 2122, which would provide an option for people with dementia needing guidance with decision-making that fell in the gap between independence and legal guardianship. The bill passed out of the House Judiciary Committee a year ago, but has been hung up in the full House.
Gideon said it was natural for people to seek support when making decision, including consultation with an attorney, accountant or physician. The bill would enable a trusted adult to serve as an informal advisor on medical issues by outlining choices, benefits and risks.
“The idea behind supported decision making is not a new concept,” she said. “However, what is new is employing the main principles to help persons with disabilities, including changes in memory and cognition, maintain control of their lives by working with supporters to understand issues and options, receive guidance and help to make choices and decisions about simple and complex issues.”
In addition, the Alzheimer’s Association is lobbying at the Statehouse on behalf of House Bill 2543. It would extend support under the Senior Care Act to people under 60 years of age with the disease.
The measure would be helpful to an estimated 2,000 Kansans through delivery of services such as attendant care, respite care, chore services and adult day care.