Kent Smalter, a Lawrence resident with amyotrophic lateral sclerosis, or ALS, uses a state-funded program to pay for his home-based care. Under state guidelines, he is only allowed to keep only $747 of his monthly Social Security income to pay for food and shelter.
Smalter is fortunate enough to live at the home of his longtime girlfriend. If he was on his own, he said, "the only practical option would be subsidized housing."
"I'm lucky. I've got some resources — human resources," said Smalter, 62, who said he worries more about elderly people trying to make it on their own on that small monthly allowance.
Kansans like Smalter who need a nursing-home level of care and have a low enough income can qualify for state programs to receive that care in their home. But they are required to spend all but $747 of their monthly income on those services, using the rest for food and shelter. This is a concern when many seniors hope to live out their twilight years in the comfort of their own homes and not in a institution, which is usually the only other option. "($747) leaves the senior with barely enough to pay rent," said Laura Bennetts, co-chair of the Douglas County Coalition on Aging.
Kansas has one of the lowest personal income allowances in the country. Only South Dakota, West Virginia, Kentucky, Illinois, Montana, Florida and Georgia have lower ones, according to a 2010 study by the AARP Public Policy Institute, with several states allowing either an unlimited amount or roughly three times what Kansas does.
At a legislative forum this month in Lawrence about issues affecting older adults, state Rep. Barbara Ballard said the topic has been brought up in the Legislature recently but that no action has been taken. The Lawrence Democrat said state policies like this one seem to be designed to cut down on fraud and based on a philosophy of "making sure you don't have much in order to give you something."
She said many seniors who use Medicaid have paid taxes into the program their entire lives. "People should be able to stay in the homes as long as they … can," Ballard said.
Molly Wood, a Lawrence attorney who specializes in elder law, said that if the Kansas Legislature raised the allowance for the frail and elderly, they'd have to increase it for the physically and developmentally disabled population as well. And while the federal government pays 60 percent of Medicaid costs, the state Legislature has opted not to expand Medicaid as part of the Affordable Care Act.
The monthly allowance in Kansas "hasn't gone up in years and years," said Wood. "The amount you can keep as a personal needs allowance in nursing homes ($62 a month) has gone up more recently than the amount you can keep and stay at home."
Still, many people are able to make it work. Those who need a nursing-home level of care often don't have a lot of personal expenses and might not much time left anyway, Wood said. "You have to have a realistic definition of success. If you meet a nursing home level of care and you're able to stay out of the nursing home for six months, isn't that a victory?" she said. "That's huge if it's someone who's really frail and has a life expectancy of 24 months. We reduced their nursing home usage by 25 percent."
Plus, she added, many older residents end up living at home with the help of informal support systems, like help from family and the Meals on Wheels program.