SPRINGFIELD - Friedrich's ataxia - a disease that causes progressive damage to the nervous system - has confined Pat Riley of Champaign to a wheelchair and left her unable to speak clearly.
Her mind is as sharp as ever, but she can no longer care for herself.
Riley is able to stay out of a nursing home with the help of two home-care assistants who help her get out of bed, brush her teeth, make phone calls, pay her bills, go shopping and do multitudes of other daily tasks most people never think twice about.
While keeping her at home saves the state an estimated $20,000 a year, the home-care workers who make that possible are paid below poverty-level wages, have no benefits and have not had a pay increase in three years, said Cindy Boland, a spokeswoman for Service Employees International Union Local 880.
The union issued a report Monday claiming that Illinois home-care workers are compensated less than similar workers in 43 other states.
The 37,000 home-care workers in Illinois are asking the General Assembly this year for an increase from $7 to $8 an hour - something that was promised to them each of the past two years but was ultimately cut out of the budget.
While many lawmakers are sympathetic, it will be a tough sell this spring. The raise would cost $24 million at a time when the state is trying to fill a $5 billion budget deficit.
Gov. Rod Blagojevich included an extra $56 million for home-care workers in his proposed budget, but the money is slated to be used to pay for more workers, not to raise existing workers' pay, said Ray Serati, spokesman for the Department of Human Services.
The union is hoping to get around that by passing legislation to require the pay increase, Boland said. The bill won approval in the House, but two members voted no and 28 voted present, citing budget concerns. It is now awaiting a committee hearing in the Senate.
While the governor's proposed budget did not address the wage issue, it did recognize the growing demand for more home-care workers.
The union said the staffing shortage is only supposed to worsen, and at the same time, more and more home-care workers are leaving the profession because they cannot get by on their paychecks.
Legislation to increase the minimum wage from $5.15 to $6.50 an hour is likely to pass this spring, making other types of work even more attractive to current home-care workers.
?I think that's a definite concern, especially with such a staffing shortage,? said Cory Muldoon, a spokesman for the union.
Julie Nichols of Mansfield works with Riley about 45 hours a week, earning $7 an hour with no benefits.
?I love my job and I hope that I don't have to quit it,? Nichols said. ?We are not even asking to come above the poverty level. Just give us something. Show us that you believe in this program.?
Riley said she is grateful that Nichols has stayed with her for more than two years, as it is a job with extremely high turnover.
Workers can get burned out, and they say it is hard to stick with it when they know they can make more money and get benefits flipping burgers.
The report the union released Monday said 45 percent of home-care workers quit in their first three months on the job.
You can reach Kate Clements at (217) 782-2486 or via e-mail at email@example.com.