For nearly two years, Denise Muthart has been trying to get help caring for her 37-year-old sister, Sandra Jonsson, who has cerebral palsy.
But like thousands of other Illinois residents, Muthart has learned the hard way that at times there simply is nowhere to turn.
“Every place I go, it’s like banging my head up against a wall,” Muthart said Tuesday while addressing a public hearing on housing needs of the state’s mentally ill and disabled residents.
“It’s become a nightmare,” said Muthart, 42, who is on several waiting lists to receive in-home services for her sister who is being cared for by Muthart, her husband, Jim, 48, and their two grown children.
Her name also is on waiting lists at community residential-treatment facilities where she believes her sister could get the type of 24-hour-a-day care she needs.
Her sister can’t talk or control her arm or leg movement. She also has no contact with anyone outside her family.
In cases like the Mutharts’, however, the demand for such services exceeds availability, according to officials from the Illinois Department of Mental Health and Developmental Disabilities.
For instance, the department currently has 3,500 housing units available for adults with mental illnesses or developmental disabilities, according to Bobby J. Wilkerson, a department spokesman.
The 3,500 housing units are in addition to the more than 6,000 beds the department has in state-run facilities for adults.
But the department currently estimates that it would need more than 49,000 housing units to properly serve Illinois adults who potentially could benefit from such community-based housing, Wilkerson said.
The need for community-based housing is believed to be even greater when children are included.
“When you take a look at the need versus what we’ve achieved, we come up short,” Wilkerson told the Citizens Council on Mental Health and Developmental Disabilities during a public hearing at the Thompson Center.
The needs of thousands of other Illinois residents who could benefit from in-home services by community-service providers also are not met even though the department currently spends more than $500 million a year on such services, said Patrick Baikauskas, the department’s legislative liaison.
The plight of people like the Mutharts is old news to people who work with the mentally ill and developmentally disabled.
What the experts also are seeing is that many care-givers are getting too old to continue providing for their loved ones.
“Unfortunately, as people age and become less able to provide care, you often see the whole family situation begin to deteroriate,” said Elizabeth Lacey, executive director of Community Support Services Inc.
Ironically, while the $1 billion-a-year department has decided to rely more heavily on community-based services as part of its reform plan, the funding to match it has not occurred.
During the current fiscal year, for example, Lacey said organizations like hers will receive a 3 percent increase in funding compared with last year. But the increase won’t take effect until April 1995, which means that over the current fiscal year the increase will amount to .83 percent.
