Sylvia Twardowski can expect to make about $28,000 this year as a caregiver for Illinoisans who are developmentally disabled. It's not a bad living. Except that she'll have to work 72 hours a week at three different jobs to achieve it.
"I have no life. Look at what it is costing me," the LaSalle woman says.
Twardowski's situation is common among direct care workers who feed, soothe and bathe people with such conditions as mental retardation, autism or cerebral palsy. At an average of $7.50 an hour, the wage in Illinois qualifies these workers for food stamps and puts a family of four below the poverty line.
These low wages have drawn some lawmakers' attention. The Illinois House favored a $1-an-hour raise, but the measure didn't make it out of a Senate committee during the fall veto session. The matter will likely come up again in the spring, says state Rep. Julie Hamos, the Evanston Democrat who sponsored the measure. "We have not been making these investments over time to make sure we have these services in place."
But even if state officials raise the salaries of direct care workers, they'll be addressing only one aspect of a systemic problem, critics say. The state has, they argue, an abysmal record in funding all services for the developmentally disabled. As a result, some services simply aren't available. Further, the state clings to outmoded methods of delivering those services that do exist.
Still, many see a raise as a good start. Tony Paulauski, executive director of The Arc of Illinois, a statewide advocacy group with 55 chapters that serve about 25,000 people, says it would give his employees a much-needed pat on the back and help them make ends meet.
There are more than 144,000 Illinoisans with developmental disabilities, says David Braddock, head of the department of disability and human development at the University of Illinois at Chicago. The direct care workers who help those fortunate enough to have professional care, says Braddock, typically are women with high school diplomas. And they tend to be people who have an ability to accept others as they are.
The proposed raise would affect care workers in private facilities. "These jobs are very difficult and demanding," says Roberta Lynch, deputy director of the American Federation of State, County and Municipal Employees, Council 31. The union represents state-employed direct care workers, and Lynch says that with experience those workers can expect to make about $28,000 a year for a normal work week without overtime. To fix the pay disparity, AFSCME is trying to unionize the private workers and has spearheaded the effort to get the $l-an-hour pay raise.
"It is scandalous in terms of care. It shows a lack of respect and recognition. And we're cheating the people with developmental disabilities, who have difficulty bonding with their caregivers because of the high turnover."
With pay that is comparable to jobs at fast food joints or discount stores, it's easy to see why up to 80 percent of new hires in the direct care field quit after the first year.
Andy Larsson, a 34-year-old with Down syndrome, has had 24 care givers over the last five years in a small group home in Lemont, where he lives with three high school friends. His mother, Thelma Larsson of South Holland, has nothing but praise for her son's caregivers. However, Andy has a hard time adjusting when staff members leave. He cries, thinking the caregiver didn't like him. "It is very obvious that many of them would like to stay, but when a job that pays more comes along, they have to take it," she says. "I understand that, but it is heartbreaking to our children. I really believe my son thinks he is at fault. That gets hard to address as a parent."
Providers agree it's the developmentally disabled who feel the effects of staff turnover and shortages. The essentials ? bathing, feeding and toileting ? get done, but residents may have to wait for that care. And they lose out on such one-on-one interaction as receiving a lesson in doing laundry. That may not sound like a big deal, but Twardowski says the lessons add to the quality of life for the people she serves. "There's only so much TV you can watch," she says. "They get bored and then get into trouble. One guy would throw furniture around."
But there are other costs to consider. The proposed raise would cost the state about $35 million for 22,000 workers, with the federal government matching that amount. But those dollars would only be a drop in the bucket, experts say, if the state decided to tackle wider reforms. A look at the statistics reveals that Illinois ranks 39th in spending on community care in settings for 15 or fewer people, according to a study done last year by the University of Illinois at Chicago.
Advocates, caregivers and parents have joined a unified lobbying effort to convince Gov. George Ryan to make increased spending on services for the developmentally disabled a priority when he unveils his budget plan this month. For its part, Ryan's office reports that wages for direct care workers have gone from an average of $5.50 an hour to the current average $7.50 an hour since the governor took office. "Now is that enough? Probably not," says Nick Palazzolo, a spokesman for Ryan until recently. "The governor will take that into consideration as he puts together his next budget."
For now, Illinois lags behind other states, some of which pay direct care workers about 30 percent more than they make here.
Illinois lags behind in other ways, too, say critics. This state, they argue, hasn't kept up with trends in treatment. Studies show the developmentally disabled have a much higher quality of life in smaller settings and fare even better when they can be home with family and receive individual attention, Braddock says. As a result, some states are moving away from institutional settings by funding smaller group homes, supported living and individualized placements, and they are providing services to help families keep their loved ones home.
But Illinois has a long history of support for care in institutional settings, and there has been a clash between those who still believe that care is best and others who believe in community services and family support programs.
In fact, Illinois is near the top in the number of developmentally disabled individuals living in institutions serving 16 or more people. According to the UIC study, in 1998 there were 3,405 in state-operated facilities, 4,913 in private, state-funded operations and 1,543 in nursing homes. There were another 10,236 people living in state-funded facilities with 15 or fewer people. That means roughly 50 percent of those in out-of-home placements were in facilities serving 16 or more people.
That is not the case in other states. For instance, Michigan has only 275 developmentally disabled people living in institutions. Since 1967, the number of people in state-operated institutions nationwide has declined by 3 percent to 6 percent a year. In Illinois, the decline has been much slower. Currently, 3,176 people are in institutional settings, down from 6,580 in 1977. Only five states have more people in institutions.
"I don't think most people in Illinois realize the extensive progress that has been made in many other states," says Braddock. "Compared to other relatively progressive wealthy states, we have not been keeping up. However, we are not an average state. We're an economic powerhouse. We're presumably politically sophisticated. We have a social conscience."
The bottom line, Braddock says, is that Illinois needs to improve community and family support services.
That's especially so because in some cases there are no such services available. Arc, the organization headed by Paulauski, estimates that about 15,000 people not currently in the pipeline may be waiting for services.
"The state of Illinois is not fulfilling its obligation under the law to provide services to adults with developmental disabilities," says Robert Parley Jr., a Naperville attorney and father of a developmentally disabled son. "There needs to be an overall commitment to provide services. But right now, the incentive is not to fund services or encourage people to seek services because the more people being served, the more it will cost the state."
Farley says many parents are shocked to find there may not be programs available for their adult children once school services end at age 21. Last fall, he filed a federal suit on behalf of five people who have been waiting for services, in some cases for years. For instance, a 37-year-old severely mentally disabled woman lives with her parents in Chicago Heights and receives no Medicaid funding, though, according to Farley, she is eligible to live in a group home.
Farley believes people should be entitled to receive services within 90 days of being evaluated. Now, the state is more likely to provide care in an emergency situation, such as the death of a caregiver, he says.
Farley's suit isn't the only case with the potential to affect policy and treatment practices for people with disabilities. A recent U.S. Supreme Court decision, Olmstead v. L. C., found that unwarranted institutionalization of people with disabilities is a form of discrimination and actionable under the Americans with Disabilities Act.
In fact, most states that have initiated reforms have done so only after being sued. But Illinois has experienced only limited class action litigation to force real change, Braddock says. The lawsuits essentially have been restricted to nursing homes.
Braddock also notes that there are 16 lawsuits over waiting lists pending in 13 states, including Illinois. "If you continue to isolate and stigmatize individuals by setting them apart from society, you limit these individuals in fundamental ways that are finally being recognized as illegal under legislation such as the Americans with Disabilities Act and the recent Olmstead case," he says. "The policy is very damaging to people."
But so far, the response in Illinois to Olmstead has been slow. As outlined in a letter to Illinois lawmakers from the state Department of Human Services, Gov. Ryan has asked the department to "review policies regarding the placement of persons with [developmental] disabilities to ensure that the most integrated community-based services are being provided."
Whatever the outcome of that review, Braddock sees a future with more individualized care and with a greater emphasis on support for families. Institutions will continue to close. About eight states have no institutional care for people with developmental disabilities. And Braddock predicts that if present trends continue every other state will close its remaining institutions sometime between 2012 and 2025.
Until the methods improve and the funding comes through, Illinois families and direct caregivers are left to weigh their options. Parents will continue to fight for their children. Braddock says. And there will be increased pressure on states to develop plans and programs for the developmentally disabled as the baby boomer generation ages and as parents worry about care for their children once they are gone. Nationwide, there are an estimated 480,000 developmentally disabled people living with caregivers who are over the age of 60.
But Bonnie Hagemeyer doesn't have the luxury of waiting until the problems get fixed. She quit her job to take care of her son, John, full-time when there were no services available to him once he graduated from high school in 1994.
Despite the cerebral palsy, John was active in school, attending prom and other school dances, and working at a part-time job putting together a transmission part. After graduation, he planned to continue working, but because he needed help in the bathroom and used a wheelchair, his employer said he could no longer work, Hagemeyer says. That news was devastating. "He was given a sentence that he would sit at home for the rest of his life. His life was going to end."
At first, Hagemeyer tried to use the system. It wasn't easy. She told her story to anyone who would listen and eventually was able to secure services for John with help from several newspapers and state lawmakers. To fund the services, the family sold their house to a private organization, thinking they were ensuring a secure place for John to live more independently in a group home.
That didn't work. More than 40 people cared for her son over four years and shifts were often short-staffed with one person instead of two. She says food and personal items were stolen. The group home where John lived often smelled of urine. His teeth deteriorated, and his skin became so dry that it split. Hagemeyer blames the problems on underpaid staff who were unmotivated by their wages and desperate enough to steal from clients.
After three years in the group home, the Hagemeyers made plans for John to live with them. They began building their new wheelchair accessible home. "We wanted John to have a life," says Hagemeyer.
At the same time, Twardowski has given a lot of thought to getting her life back. She's contemplated finding an easier, better paying job. But she's torn. She loves the fulfillment she gets from helping some of society's most vulnerable people. When she first started the job, "It scared the heck out of me," she says. "But they became my family. This is so rewarding. I feel very fulfilled every day."
Kristy Kennedy is a Naperville free-lance writer who previously covered DuPage County for the Daily Herald, a suburban metro newspaper. Her last story for Illinois Issues, "La Differencial appeared in October.
