JEFFERSON CITY - Dana Miller does not want to go to a nursing home.
The 50-year-old Columbia woman has been a quadriplegic for 17 years, and she is looking for a way to cope with Missouri Medicaid reform.
Miller was one of about 300 people, many in wheelchairs, who filled the Capitol Tuesday to speak out against the state administration's cuts in welfare. People held posters saying "We can't keep Holden on" and "Rent? Food? Medicine? Will I have to choose?"
At issue is a method of calculating medical assistance for the disabled and elderly, termed "spend down." If a patient's monthly income is more than $545, Medicaid benefits do not kick in until medical expenses bring that income down to $545. Any excess income must be "spent down" until that point.
Changes to the program, scheduled to take effect Oct. 1, would prevent Medicaid from paying costs incurred by patients before they reach the $545 level. Mary Fallen, assistant deputy director for income maintenance with the Family Services Division, said the program has been paying bills it received from care providers, which sometimes come in before a patient's Medicaid takes effect.
"A state audit found that Medicaid should not be paying spenddown money," Fallen said. In effect, Medicaid will no longer pay costs it was not supposed to pay. Fallen added that if someone wants to enjoy complete Medicaid coverage with no lapses, that patient could opt to pay the full Spenddown amount at the beginning of each month.
For Miller, that means she "will have to take money out of [her] pocket." She said she may not have enough money left to pay the attendants she needs to help her with daily tasks.
"My family can't afford to pay for help," she said, adding that nursing homes "treat you like a caged animal."
Richard Blakley is executive director of the Disabled Citizens' Alliance, an independent living center in Viburnum. He said the legislation will force people who want to live independently to live on an average of $545 per month. The crowd chanted, "We can't live on 545."
"It's not a matter of money," Blakley said. "It's a matter of priorities."
Sen. Sarah Steelman, R-Rolla, agreed. She said Gov. Bob Holden should postpone reform of the system until it can be reevaluated in the next legislative session.
"Right now, the amount some people have to spend on prescription drugs will not leave any left over to live off of," Steelman said. "We're not talking about that much money" to fill the expense gap, she said. "Maybe we can spend a little less money regulating people and help these people."
Chris Manhart, a 42-year-old man with muscular dystrophy, worked from his wheelchair for 18 years. He lives with his parents but said he wants financial independence.
"I'm not comfortable unless I support myself," Manhart said. He also said he does not want to go to an institution.
"I hope they (legislators) will consider the effect this will have on keeping families together," Manhart said.
Chris Kelly, spokeperson for Gov. Holden, said the Oct. 1 date cannot change.
"The governor cannot override that, but he would like to see something in the works before the legislative session," Kelly said. "Protecting Missouri's most vulnerable citizens has always been a priority."