It’s a real big deal to some people. Almost life-and-death big. I’m referring to Gov. Bruce Rauner’s budget address Wednesday, which really doesn’t mean a whole lot to most people in Illinois.
Susan Aarup plans to roll herself down to Springfield from Chicago. She will take a train to the state Capitol and eventually roll her wheelchair to a rally for the developmentally disabled.
Aarup, 46, depends on home care assistants, sometimes called personal assistants or key aides, to live. These are people paid by the state to perform everyday tasks for people who otherwise might be forced to live in nursing homes.
“They get me out of bed in the morning and put me into my wheelchair,” Aarup explained. “They put me back in bed at night. They cook. They clean. They do shopping. Without their help, I would be forced to live in a nursing home.”
Instead she lives in the Clearing community on Chicago’s Southwest Side. She is co-chair of ADAPT, a grass-roots organization that advocates for the developmentally disabled and physically handicapped.
Aarup works for Access Living, another organization that works to make sure that people with disabilities can “live fully-engaged and self-directed lives.” She also attends the Lutheran School of Theology in Chicago’s Hyde Park community, where she studies pastoral counseling.
“The governor has said he’s going to cut the budget,” Aarup said. “Human services are always among the first cuts to be made. There’s talk of cutting home services $40 million right now. There isn’t enough money in the budget to keep the program fully funded through the end of June.
“There are about (30,000) of us in Illinois who depend on these services for our survival as independent people. I would like people to know that these cuts are horrifying to us. I live alone right now with the help of the home care workers, but that ends if those services are ever cut.”
Three different home care workers — Nicole, Herman and Jill — help Aarup, providing four to eight hours of assistance each day on a staggered schedule. Herman Godfrey, of Chicago, is paid a little more than $11 an hour for taking care of Aarup.
“My typical paycheck is $320 something, about $100 after taxes and union dues are taken out,” Godfrey said. “That’s for 30 hours a week.”
Illinois is infamous for its low pay for home care workers. It has ranked near the bottom of the nation in funding programs for the developmentally disabled for decades.
“If there’s any cut in pay or hours, I will have to find something else to do,” Godfrey said. “I mean, it’s hardly worth working for $100 take home.”
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This is not a Democratic problem or a Republican problem. Illinois simply doesn’t pay much attention to people who are truly needy and don’t have a powerful voice in the political process.
Children placed in the hands of the state child welfare agency, the elderly in nursing homes, the disabled and mentally ill are tossed to the side, where tragedies occasionally promote their lives of woe to the front pages of newspapers or the top of the TV news.
I have stated repeatedly in this space over the years that when the government slashes spending, the politically connected, the companies and organizations that donate big money to election campaigns, the in-laws on the payroll are almost never hurt.
The people who suffer the most are always those who deserve and need our protection.
There’s an outcry from taxpayers about government waste primarily because taxes have gone up, but there is little demand for spending money more efficiently, more effectively, making sure that funds end up helping those most in need.
Maybe it’s just too hard to make things work right. Maybe voters don’t respond to that sort of pledge at the polls. So the public appeals by electing leaders who are always for either more spending or cutbacks.
“Give the government less money, and it will manage what it has more efficiently,” I’ve heard people say.
Horsebleep! Cut the government budget and people in wheelchairs, struggling to live on their own with minimum government support, will likely end up hurting. Or in nursing homes, where taxpayers will pay three to four times as much to support them.
We’ve already done that sort of thing with the mentally ill, shipping them off to jails and prisons because Illinois has failed to provide adequate money to pay for community-based care.
Aarup and other members of ADAPT will roll their wheelchairs to the Capitol on Wednesday, hoping people will care. Praying that the public will feel some sense of outrage, or maybe just a little embarrassment, that people like her are forced to beg for help.
There will be others down there as well, people representing charities and social service organizations, who are deserving. With the state short billions of dollars, revenue down and cuts on the way, someone is going to have to be sacrificed.
A shared sacrifice, Rauner called it in his State of the State speech this month.
Some people are always forced to share a lot more than others.