JEFFERSON CITY - It's a catch-22 for many disabled citizens with a work history in Missouri: they receive a check big enough to disqualify them for for Medicaid, but not enough to hire a private care assistant. Current law allows financial aid for personal care assistance to those who show need, but it's set to expire June 30.
"Without the program, I'm not sure what's going to happen," said Lisa Walsh, who has been on the program since 1990 and has been working since 1985. "Please take away the sunset (provision) and let the program go on."
The act would allow continual financial aid for personal care assistance services to each person who was participating as a non-Medicaid eligible client and does not have access to affordable employer-sponsored health care insurance or other affordable health care coverage.
Tim Azinger, director of the Center for Independent Living in Farmington, said the program was cut and then saved at the end of last year's session, with a sunset date of June 30, 2006. Before the legislature are bills to remove that expiration date.
"We are seeking to resuscitate this program," Azinger said. "Last year we thought, 'we have a year to fix this,'" he said, in reference to the one year extension the program was granted during last year's session.
Azinger's knowledge of the difficulties disabled workers meet came to him firsthand. He broke his neck 18 years ago and now gets around in a wheelchair. The fact that he was in the military at the time gave him the opportunity to do rehabilitation in military facilities.
He pointed out that not all who become disabled have those advantages as he introduced Gary Copeland, also disabled 18 years ago in an unrelated incident.
"I had the good fortune of being in the military rehab centers," Azinger said. "Gary was in the private sector and was not as fortunate."
Copeland described how the program helped when a disability entered his life and he was above the Medicaid eligible level.
"With my personal care attendant I am able to have a life outside my home," he said. "I am able to work. Without the program, I would possibly be back within my home or worse, in a nursing home."
Copeland's personal assistant is with him every day of the week for about six hours per day.
In the morning, the assistant helps Copeland out of bed and into a shower chair, helping him wash as well. The assistant then helps transfer him back to his bed to dress for the day, preparing breakfast afterwards.
Copeland is then transferred back to his chair to go to work at the Center of Independent Living, where he is a community access specialist.
The assistant drives Copeland to work and picks him up again at the end of the day. He is prepared dinner and eventually will be transferred to his bed to undress and close out the day.
When Copeland does not work on the weekends, the assistant still comes to carry out normal, household duties.
"Without my assistant, I wouldn't be able to do anything -- dress, shower, transfer myself," Copeland said.
The Senate bill's sponsor, Sen. Kevin Engler, R-Farmington, expressed hope about the bill's chances, but said its success may depend on budgetary issues.
"In the short term, its money," he said. "But in the long term its more detrimental to the workers to not let them continue to work."
Lifting the sunset date on the program isn't the only concern for those who receive assistance. Many, including Azinger, voice worry if the program would replenish the number of people in the program in cases of participant death or if it would slowly expire as those on the program pass away.
"I would hope that funding mechanisms would allow for that (continued replenishment)," Engler said.
Azinger said that according to the state health department, the program had around 240 participants at its peak. Now, about 80 to 100 people participate.
Engler said he was hopeful to bring the legislation to a vote in the General Laws committee by the next couple of weeks.