"This is a generation that's taken care of us all their lives and we're cheating them, we're cheating them."
The girls in the beauty shop are in rare form. The beauty shop is in a nursing home and the subject is the monthly allowance nursing home residents on Medicaid receive - $30. "Are they expected to choose if they get their hair done or go out for lunch?" Janet Bailey asks as she rolls a customer's hair. She's warming up to the topic: The faster she talks, the faster she whips hair around the roller. "This is a generation that's taken care of us all their lives and we're cheating them, we're cheating them." Bailey operates a beauty salon in her home. But on Tuesdays and Wednesdays, she runs the in-house salon at Heritage Manor Nursing Home in Chillicothe. A shampoo costs $2, a shampoo and set costs $10 and a perm costs $35. While Bailey's supply costs steadily increase, she refuses to raise prices for residents. She has run the shop at Heritage Manor for 28 years and she knows, for many, a shampoo and set amounts to one-third of their monthly income. "I'm not complaining, I'm really not," Bailey continues. "But I'm not going to put a price tag on whether or not they can feel good about themselves." But that's why the $30 monthly allowance for almost two-thirds of Illinois' nursing home residents, some 55,000 people, hasn't changed in 20 years - the price tag. Unless or until a loved one can no longer afford the high cost of nursing home care, most people are unfamiliar with personal needs allowances, or PNAs, as insiders call them. But many know nursing home costs can eat assets, including pensions and Social Security checks, quickly. At the point retirement assets no longer cover costs, the state's Medicaid program picks up the difference. The personal needs allowance is the money from their monthly Social Security check that a resident on Medicaid is allowed to keep for personal expenses, such as clothing, toiletries, cosmetics, stamps, or snacks. Thirty dollars is the minimum allowed by federal regulations. States are free to subsidize the amount - and many do - but not Illinois. Most state PNAs range from $40 to $60. Though many state legislatures have voted to increase the allowances since 2000, Illinois' personal needs allowance remains among the bottom five, along with Alabama, Missouri, North Carolina and Oregon. "People don't see the need, that's the problem. State legislators don't see the need, that's the problem. They're the ones who make up the state budget," says Stacia Miller, regional long-term care ombudsman for nursing home residents in central Illinois. The $30, she points out, is not free money. It's the small amount of nursing home residents' Social Security checks that the federal government allows them to keep. Actually, legislators realize the need. It's a matter of paying for it and how much a priority raising it is in tight-budget times. Resident advocates spearheaded a statewide petition campaign to increase the minimum last year. Over the past decade at least, a bipartisan bevy of lawmakers has introduced bills to raise the $30 allowance. So far, no bill has made it to the floor of the House or the Senate for an actual vote. "It's all about money," says State Sen. Christine Radogno (R-Lemont), who sits on the committees that would play a role in moving a bill along, including the rules, human services and budget committees. "Obviously everyone would love to see residents have a little more money in their pockets. The problem is, to the extent it's given to residents, that money is not available to nursing homes to help pay for their care." Expect state costs to rise $6.6 million for every $10 increase in the personal needs allowance, according to the government formula. For instance, a bill introduced last year by State Sen. A.J. Wilhelmi (D-Crest Hill) would raise allowances from $30 to $90, a cost of about $40 million. "It's not that they don't have a good cause, they do," Sen. Radogno says. "It's just that they're competing with lots of other good causes." Advocates reject the idea that giving more money to residents would have to mean taking money from nursing homes. Legislators "always introduce bills and nothing happens, it's nobody's priority," says Wendy Meltzer, of Illinois Citizens for Better Care, a Chicago-based nursing home reform group. "It never gets to a floor vote, so people never have to vote for it or against it. That would look bad." Legislative inaction amounts to public policy, whereby many nursing home residents rely on family, friends and charity for basic needs. "My kids help me, they have to," says Arlene Cemenska, a resident of Heritage Manor for eight years. "But some people don't have kids." Cemenska, 81, says she budgets the $30 "very carefully" to afford $35 for a permanent every three months, crossword puzzles and art supplies to help pass the time. She counts on gifts to supply clothing. If the nursing home arranges an outing to Wal-Mart, she has to ask her children for spending money. "I hate to ask," she says. "But by the time I buy personal items, like toothpaste, you don't have money for anything else." Another resident, Blanche Canary, counts on her son to buy small items, like shampoo. Heritage Manor supplies shampoo, but she doesn't like their brand. "It doesn't have conditioner," she says. Canary, 83, worked most of her life, beginning at age 15. She has worked cleaning a bank, in a dress factory and as a waitress. A week after her husband died, she recalls, she made the last mortgage payment on her home of 50 years. She makes bouncy small talk, much like a good waitress, to residents and staff as she scoots through the nursing home's hallways in her wheelchair. Her cheery outlook blunts the fact that she saved for a couple of months to buy a winter coat. "And it wasn't an expensive coat," she says. It's easy to find people at Heritage Manor, where about 50 percent are on Medicaid, who know all about the personal needs allowance and what residents sacrifice because it's so low. "On the flip side, a person coming into the nursing home who is on public aid is going to have all their needs met, nurses, doctors, food, a warm, dry bed," says Marty Schlink, administrator at Heritage Manor. "In that regard, Medicaid is very good." Heritage Manor, unlike some nursing homes, accepts residents on Medicaid. In reality, many residents or their families could not afford nursing-home care without the Medicaid subsidy. The average cost in Illinois is about $5,000 a month. If lawmakers take up efforts to increase the personal needs allowance, nursing home administrators wonder where the money would come from. Matt Nieukirk, administrator of Bel-Wood Nursing Home in Peoria County, sympathizes with residents. But about 190 of Bel-Wood's 265 residents are on Medicaid. The state reimburses the facility $100 a day for a resident on Medicaid, though it costs the facility $135 a day for their care, he says. "It comes down to this: Residents aren't paying much for the care they're receiving. If you're going to look at upping the personal needs allowance, you're going to have to look at upping the reimbursement rates." Meltzer, of Illinois Citizens for Better Care, reframes the question from "Where will the money come from?" to "How much money does a nursing home resident get to keep before the nursing home gets its share?" While the $30 allowance has remained the same for 20 years, nursing home residents have seen annual cost-of-living increases in their Social Security checks. But all of it goes to the nursing home, none to the resident. In effect, Meltzer says, the state uses Social Security cost-of-living increases to help finance nursing home payments. "That's saying the absolute poorest people in the state are paying for nursing home care in the back-door way and it's sad, it's really sad," she says. "I really do know residents who don't go outside in the winter because they only have slippers, they don't have warm shoes." Pam Adams can be reached at email@example.com.