The Arc is quoted in this story from the Daily Herald.
Mabley Center is ‘home’ to disabled, but many want it to close
Legendary newspaperman Jack Mabley’s heart-wrenching columns in the 1950s, exposing a state-run “hellhole,” where human beings were covered in feces, bathed with hoses and tied to beds, changed the world.
Jack’s columns about the “Dixon State School” shocked the public, inspired new government policies, altered the way children and adults with developmental disabilities would live and forever endeared him to the parents and advocates who benefited from his passionate telling of their plight.
“It terrified me that a civilized society could treat its own so cruelly,” wrote Jack, who died in 2006 at age 90.
“Improving the lives of those unfortunates is Jack’s legacy, and a proud one,” says John Gorman, the communications director for Maryville Academy and a former assistant for Jack. “He was the most decent person I ever met in more than 25 years in the newspaper business.”
In addition to raising millions of dollars through his Forgotten Children’s Fund, Jack was instrumental in the state’s decision to close the school in Dixon, where 5,000 disabled people were warehoused, and turn it into a prison. When the state opened a much smaller community of group homes in the shadow of the old building, then-Gov. James R. Thompson bypassed Ronald Reagan in the president’s hometown to name the facility the Jack Mabley Developmental Center.
With the state now facing budget deficits, Gov. Pat Quinn’s push to close the Mabley Center has fueled a fight that pits powerful interests against each other. A mediator ruled last week that closing the Mabley Center and others would violate the state’s union contract. Politicians, unions and lawyers will continue to wage that battle about contracts and money. Experts and advocates debate whether an institution such as Mabley remains the best option for the profoundly disabled.
Others simply want people to know the human side of the story that Jack was so good at telling.
Lake Bluff’s Mary Riley remembers the old facility, where her son was slated to live.
“When I saw it, it was just so terrible, I couldn’t leave him there,” Riley says. Instead, she struggled to care for John — who is hearing-impaired, autistic, doesn’t speak or read and has a low IQ — in their suburban home. As a man, John’s inappropriate behavior resulted in him being asked to leave a Chicago institution and led to him being deemed unsuitable for a smaller group home.
Now 47, John Riley has lived for the last 20 years at the Mabley Center, which currently is home to 87 people, including 30 with hearing loss, 35 with vision loss and seven afflicted with both disabilities. John and others communicate through a specially designed sign language unique to the Mabley Center.
“He used to bang his head on the refrigerator. He used to break the toilets,” his mom remembers as she sits at the Mabley Center with other parents and residents. “But he loves it here.”
So much so that when Riley brings her son to the family home for Christmas, he unplugs the Christmas tree lights at 7 p.m. “because he wants to go home, to Mabley,” Riley says.
Other parents nod their heads in agreement.
“He’s happy when he’s here,” Violet Fleming says of her 47-year-old son, Marty, who has the mental ability of a 3-year-old, needs to have his liquids thickened and his food finely chopped so he doesn’t choke, and also suffers from schizophrenia. “Every time we take him back after an outing he goes in shouting, ‘I’m home!’”
Mabley is the longtime home for Dawn Furtek, 45, who sits quietly at the table as she communicates through sign language and her iPad. Autistic and deaf with the mental abilities of a second-grader, Furtek used to overturn furniture, hurt herself and would lash out at strangers when she lived at home, remembers her younger sister, Angela Black Childers, a licensed social worker from Hampshire.
“They’re phenomenal,” Childers says of the 160 Mabley staff members under the supervision of director Tim Naill.
The postings on SaveMabley.com contain the same heartfelt passion that Jack Mabley employed to encourage legislators and society to create the smaller residential campus, which has seven homes that can house up to 17 people each. But other advocates for people with developmental disabilities use that same philosophy to support the closing of Mabley.
“Mabley was an improvement over Dixon, clearly. And now we take it one step further,” says Karen Ward, vice president for public policy at Equip for Equality, a not-for-profit group that advocates for people with disabilities, and has been a partner in groundbreaking civil rights cases granting people with disabilities the power to move out of institutions and into less-restrictive group homes, which cost less to operate.
While fans hail the Mabley campus as the newest and smallest state-run facility, it still is “outmoded” and a “segregated campus” that just isn’t as desirable as smaller homes scattered throughout the community, Ward says.
The Arc of Illinois, a 60-year-old grass-roots advocacy group for people with developmental disabilities and their families, supports the push to close Mabley.
“Yes, it’s a nice campus, but it’s not a home. It’s a nursing home,” says Tony Paulauski, executive director of the not-for-profit group. He says Illinois is “woefully behind” in the trend of smaller homes in the community.
The parents and loved ones behind the “Save Mabley” effort say they agree with that sentiment but think their reality won’t fit into a scenario they consider a fantasy.
“Everybody does not fit in that envelope,” says Nicholas De Leonardis, former president of the Mabley parent association. A longtime DePaul University professor, De Leonardis was instrumental in developing the sign language used at Mabley, where his deaf, mute and disabled daughter, Deborah, lived until her death in 2002.
“She thrived there,” De Leonardis says. “That was her home, and these were her friends. As a parent, you can’t ask for more than that.”
Some Mabley residents have tried smaller homes and were returned to Mabley. Others have successfully made that transition. Proponents of the closure say the state will provide better environments for the residents in smaller group homes.
“They will have the support and service they need,” says Deborah M. Kennedy, vice president of Equip for Equality’s abuse investigation unit.
Mabley supporters don’t trust Illinois to match the services provided at Mabley. It’s “a community within a community” for her sister, says Childers, a school social worker. “She really has the best of both worlds. That’s why she’s soared. We know what’s good for Dawn. We have to think, ‘This is her home.’”
The women’s mother, Cindy Black, became a licensed social worker and advocate for people with disabilities because of Dawn. Black says Mabley, with its veteran, stable staff and frequent outings into the community, is the “least-restrictive” environment for Dawn.
Paulauski, Ward and Kennedy say they also want what is best for the Mabley residents. They point to studies in the 14 states that have no institutions as proof that Illinois could also provide better care with smaller homes.
“It isn’t that there is something unique about the people living in Mabley,” says Ward, who adds that people with blindness, deafness and profound disabilities do thrive in smaller homes.
Kennedy says moves and changes in environments and routine can create “transfer trauma” for some residents, “but we think we can make it work.”
Both sides are expected to make their cases in the next public hearing set for 5 p.m. Oct. 17 in the Dixon Theater.
Read more: http://www.dailyherald.com/article/20111009/news/710099893/#ixzz1aQ7CnlZu.