Fw: Arc and Mabley is Home to Some

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Arc and Mabley is Home to SomeFYI

Ellen

Ellen Garber Bronfeld

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Arc and Mabley is Home to Some

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Dear Ellen,

The Arc is quoted in this story from the Daily Herald.

Tony

Mabley Center is ‘home' to disabled, but many want it

to close

By Burt Constable

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 Schoolâ€

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 Gorman, the communications director for

ville 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.â€

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. R. bypassed

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 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 — who

is hearing-impaired, autistic, doesn't speak or read and has a low IQ — in

their suburban home. As a man, '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, 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.

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.â€

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!'â€

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, 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 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 auski, 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 Mableyâ€

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

De Leonardis, former president of the Mabley parent association. A

longtime De 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.â€

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,â€

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.'â€

The women's mother, 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.

auski, 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.â€

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.

Tony auski

Executive Director

The Arc of Illinois

20901 S. LaGrange Rd. Suite 209

fort, IL 60423

815-464-1832 (OFFICE)

708-828-0188 (CELL)

Tony@...

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