Feeling the pinch

Leemon and Elaine Priest represent some of the unintended consequences of last year's Medicaid cuts.

The Priests don't live an elaborate lifestyle. They make their home in a trailer court, in a mobile home they own. The couple doesn't go out much, choosing instead to stay at home and pinch pennies where they can.

Before the reductions to Missouri's state/federal medical assistance program for the poor, children, elderly and disabled took effect last August, one bill the Priests didn't have to worry about was medical expenses. Those expenses can be quite large -- Elaine suffers from Parkinson's developed after a stroke, and Leemon has multiple sclerosis.

He works about 12 hours a week at the SEMO Alliance for Disability Independence, but the Parkinson's prevents his wife from working.

She takes seven medications, he takes five.

"When they changed it, it came down to a choice of paying bills or a house payment or having money to spend to meet the spend-down," said Leemon.

The spend-down is the amount a person must spend on medical costs before Medicaid benefits kick in.

Before August, the Priests only had to spend $58 per month out-of-pocket on medical expenses. Changes to Medicaid's income eligibility mean now that number has jumped to $633 a month, more than one-third of the couple's roughly $1,700-per-month fixed income.

In all the medications they pay for cost about $600 each month including $400 for Elaine's.

"That is a tremendous amount when you're on a fixed income," said Leemon, who also now has to pay for his wheelchair and sleep apnea treatment device. Those pieces of equipment were covered by Medicaid but are not anymore.

"Some months you have to chose one: Are you going to pay your electric bill or buy your medicine?" Leemon said.

When lawmakers voted to cut spending on Medicaid last year, they were trying to find ways to save a program that was expanding quickly and headed toward bankruptcy. Legislators passed $900 million in cuts to the program and set a 2008 date for its end in Missouri.

State Sen. Jason Crowell, R-Cape Girardeau, said if the program had continued as it was before the cuts, $930 million extra in funds from the general revenue would be needed to sustain Medicaid this year. With the reforms, the program will still cost $275 million more than it did last year, he said.

"What we dealt with last year was bankruptcy, and it was a tough decision to make ... for the viability of health care into the future," said Crowell. "Missouri could have gone the same route as Tennessee and just ended Medicaid, went bankrupt and ended it."

In Crowell's view, the legislature and Republican administration made the best compromise possible to ensure Medicaid would continue.

After hearing findings from the governor-appointed Medicaid Reform Commission this year, lawmakers are now looking at ways to improve health care in the future. Crowell has drawn up a plan to increase access to medical care by making it easier for employers to purchase group health insurance plans.

House Speaker Rod Jetton, R-Marble Hill, is backing a house bill sponsored by Rep. Chuck Portwood, R-Ballwin, to start a new program to replace the Medical Assistance for Workers with Disabilities program. MAWD, which provided medical assistance to the working disabled, was eliminated last year as part of the Medicaid cuts.

The elimination of MAWD has been one of the most contentious aspects of Medicaid cuts. Advocates for the disabled say many Missourians with disabilities have been forced to choose between being productive, working members of society and quitting their jobs so they can afford medical care. By quitting their jobs, the individuals will fall under the economic threshhold for Medicaid coverage.

But those who are feeling the impact of the cuts think some other solution could have been reached, and the work now may be too little too late.

"I see a lot of expenditures going to people who have really never worked and never paid into society," said 62-year-old Billy. "And me, I've fallen through the cracks.

"I don't want something for nothing. I want what I worked 50 years and paid taxes to get."

Billy, who asked to remain anonymous, suffers from muscular dystrophy and gets about $1,000 per month from Social Security Disability. His medical expenses were always covered by Medicaid, but he recently found out he would have to spend about $600 per month on medical expenses before he would be covered by Medicaid.

In order to afford bills and medicine the Cape Girardeau resident has had to cut out a cholesterol medication and an anti-inflammatory drug that helps him manage the pain from his muscular dystrophy.

He's unable to work because his hands are curling into claw shapes. Where he once had muscles on his arms and legs he now has flaps of skin. Most of the deterioration has occurred in the last two years.

Now in addition to his failing health, Billy has to worry about making ends meet.

"It takes it all away from you," Billy said of his condition. "If the next two years are as bad as the last ... well, I don't even think about it."

Dr. Robert George, a Cape Girardeau family practice physician, said many of his patients are in a similar spot. Billy is one of George's patients.

George said about 60 percent of his patients are on some form of Medicaid assistance. Some abuse did exist before the reforms, George said, but he said many of those hurt by cuts needed the assistance most.

Miki Gudermith, executive director of the SEMO Alliance for Disability Independence, has also seen the effects among her clients. On its Web site, SADI has posted a call for medical equipment like batteries for electric wheelchairs to help its clients with those things Medicaid no longer covers.

"This is the only country I can think of where there's a disincentive to work," Gudermith said of MAWD's elimination. "These programs simply don't do what they were designed to do."

Legislators who voted for the cuts were out of touch, Gudermith said. "They felt they knew better, but we deal with these problems every day, and we see it."

Jody Blevins, director of programs at SADI, said one disabled couple who were married for 30 years got a divorce in order to qualify for medical coverage. Medicare part D may help some afford their prescriptions, but only those over 65, she said.

At the same time many who once had vision and dental services covered by Medicaid will now have to go without, she said.

Leemon Priest hasn't had new glasses in three years, despite the effects of glaucoma and MS. He doesn't know when he'll be able to afford them.

"I don't know what the foreseeable future holds," he said.

Advocates for the disabled and poor refuse to let the Medicaid issue die. Some have pursued appeals of their program changes -- though not as many as expected, said Deborah Scott, spokeswoman for the Missouri Department of Health and Senior Services.

But many of those affected have not. In some cases, like Billy's, the doctors have appealed for their patients, talking to caseworkers themselves. The new eligibility requirements are clear, though. In cases like Billy's, there's often no going back to the way things used to be.

msanders@semissourian.com

335-6611, extension 182