After more than a half century of marriage, Joost Koenig and Joann Koenig don't take care of each other as well as they used to.
She's a retired nurse who can't remember her own medicine regimen, let alone keep her husband on his. He's a former electrical engineer with a debilitating neuromuscular disorder. They both rely on walkers, are prone to falls and have trouble toileting and bathing. He's 89. She's 82.
Despite their issues, they don't qualify for nursing home coverage through TennCare, the state's insurance program for low-income seniors and residents with disabilities. They didn't score high enough on a point system that determines the level of long-term care the state's Medicaid program will provide.
Two years ago, though, the Koenigs would have qualified.
Under a program known as TennCare Choices, they could have selected either a nursing home or intensive at-home support from nurses and other health care providers. But the state, in an effort to curtail costs while meeting the health needs of aging baby boomers, set new rules that create a higher hurdle for families to qualify. Nearly 3,000 people who probably would have been judged to need nursing home care in early 2012 are instead getting only limited home visits.
The new guidelines are under fire from state legislators and advocates for the elderly and disabled. They question why TennCare launched the point system by emergency rule — a move that limited the degree of public input. Only one hearing, attended by 36 people, was held, just two months before the rules took effect in July 2012.
"I would contend that it was really without any real legislative or stakeholder input at that point in time," said Jesse Samples, executive director of the Tennessee Health Care Association, which represents nursing homes.
Now that the system is in place, however, the state intends to keep it. Patti Killingsworth, TennCare's chief of long-term care, told a state Senate committee in December that the agency has no plans to abandon the point system, saying there could be a "significantfinancial impact if standards were relaxed."
The agency's goal was to save $47 million in fiscal 2013 by diverting 20 percent to 25 percent of nursing home applicants to home or community-based care, Killingsworth said. The state is just under that range with a 19.6 percent diversion rate.
The move away from nursing homes
TennCare Choices won raves when it launched in 2010 to help families keep elderly relatives at home. Before the change, TennCare spent 98 percent of its long-term-care funds on institutional care, and many families admitted their loved ones to nursing homes because that was their only option.
The voluntary Choices program appeared to be a win for both sides.
By allowing families to choose personal attendants, senior day care, wheelchair ramps and other home-based services instead of nursing homes, TennCare saved money.
The price tag for home-based care was less than half that of a skilled nursing facility.
In shifting people from nursing homes to home and community-based care, Tennessee was following a national trend. The percentage of spending for these types of programs doubled from 20 percent of long-term-care expenditures in 1995 to 40 percent by 2010, according to the Kaiser Family Foundation.
By 2012, a third of Choices enrollees were opting for home-based care — but with an aging population, overall enrollment was climbing.
Despite the move away from institutional care, the state's total spending on TennCare Choices was higher in 2012 than it had been three years earlier.
At the same time, TennCare and other state agencies were being pressed by Gov. Bill Haslam to trim spending and submit yearly budgets with 5 percent cutbacks. Although TennCare is partly funded by the federal government, the state must spend dollars to get the federal match.
In July 2012, TennCare changed the rules.
Tennessee, which previously allowed people to qualify for Medicaid-funded nursing home care with only one deficiency of daily living, such as not being able to walk, now stipulates that applicants score nine points on a 26-point evaluation administered by TennCare nurses.
Someone could be incontinent, have problems walking, be unable to manage their medicines and still not score nine points.
That's basically the scenario for the Koenigs, according to their daughter, Rebecca Runyan. She lives near her parents in White House but has to travel because of her job. She cringes when she hears a siren in the middle of the night and worries when her cellphone loses network connection when she's out of town.
"We don't want to lose our freedom," Joost Koenig said. "But we realize as you get older you have to depend on people coming to take care of you. It is the same as giving up some of your freedoms. I don't want to give up too much."
Runyan had hoped to get them into an assisted-care center near their White House home, but they didn't score a nine.
"I was very surprised," Runyan said. "I'm thinking, 'These people are falling. Their nutrition is horrible. They are not taking their meds.' If they don't take their meds or they overdo their meds, it can be terminal."
Some people who don't qualify for nursing home coverage can be deemed "at risk" and receive up to $15,000 in home benefits under a new Choices category. It provides limited benefits, allowing part-time nursing services of no more than one visit a day, lasting less than eight hours, and no more than 27 total hours a week.
Almost 3,000 people ended up in this category after the first year of the new point system.
Legislators ask for explanation
The Tennessee Justice Center, an organization that advocates for families in need of health care, asked hard questions during a comment period before the rule change, including what states TennCare looked to in modeling its point system. TennCare said that while it looked at criteria from other states, it did not use any of them as a guideline.
After complaints from families and nursing homes, a state Senate committee asked TennCare officials to explain the system at a hearing in December.
Since that hearing, legislators have introduced two bills — one that would require the director of the Tennessee Commission on Aging and Disability to have input on decision making about the Choices program, and another that would require an accounting of the money that Medicaid-contracted insurers make under the program.
TennCare provides incentives to these contractors, known as managed-care organizations, to lower overall health spending.
TennCare also has taken some actions since the hearing. In a follow-up letter to Sen. Joey Hensley, R-Hohenwald, Killingsworth said the agency may consider more information from applicants who seek a "safety determination," an override that has allowed more than 750 people to qualify for nursing home care when they did not score nine points.
Killingsworth said TennCare will give nursing homes a 10-day window to submit additional information when an application has been denied, and it may expand some definitions — for instance, including diagnoses other than dementia when evaluating an applicant's behavior.
"I'm not going to sit here and tell you that the process always works perfectly, although Lord knows we try to make sure it works perfectly in a system that serves 1.2 million people," Killingsworth told the committee. "We review 30,000-something applications per year. There are bound to be times when either we don't get the right information to make the decision on the front end or sometimes when we make a mistake."
Darrell Winningham, director of reimbursement for the state nursing home association, said he is hopeful for other adjustments in the point system.
Some measurement categories bring only a score of either a zero or a three, he said, making it an all-or-nothing assessment of someone's ability to eat or walk.
Kristin Ware, a staff attorney with the Tennessee Justice Center, has been helping families trying to understand the point system.
"Tennessee, I think, is pretty rare," Ware said. "This is just an example of how the pre-admission evaluation process works. It doesn't evaluate dressing and bathing, which are pretty standard in evaluating someone's needs for care. Those are not just of social importance. Those are important in terms of evaluating whether someone is safe in their home."
Runyan said her parents, who get no TennCare assistance, require more care. She plans to apply again and appeal if they don't qualify for full long-term benefits.
"If it is going to be an hour a day or an hour and a half every other day, that is not going to do anything," she said. "That's just going to be a drop in the bucket."