All posts by Barbara Katz

They’ll Do It Themselves, Thanks

By MICHAEL WINERIP
Published: March 11, 2007
The New York Times
I LIKE it!” said Yaniv Gorodischer. “What a night!”
It was a big, big night at the group home. The three residents ­ Mr.
Gorodischer, 29, Jason Kingsley, 32, and Raymond Frost Jr., 28 ­ along with an entourage that included their group home supervisor, Ernest Daniels, and their parents, were going to the Town Board meeting to present a petition to get a sidewalk for their busy street, Chatterton Parkway.
All three had put on neckties. “For Town Hall I want to look decent,” Mr.Frost said. “Handsome and decent.” He’d practiced his speech six times. “I’m going to say, ‘My name is Raymond Frost Jr.’ And I’ll say that we got our neighbors to sign the petition, and 28 signed and 2 didn’t want to.”
And Mr. Gorodischer said: “First off, I’ll say, ‘My name is Yaniv
Gorodischer.’ And I can remember, I remember … shoot, I forgot.”
For that reason, Emily Kingsley, Jason’s mother, had written a speech for them to read. “Just in case,” she said, handing it to her son.
“We won’t need it,” he said. “We know how to say it.”
Several weeks before, Ms. Kingsley had drawn up the petition and
accompanied her son and his two roommates door to door. All three men have Down syndrome and cannot drive, but they are striving to be as independent as possible, and that means walking to their jobs along this street with its steep hill, its blind curve and cars that whiz by.
Ms. Kingsley, 67, had stood in the driveways while the three men knocked on doors, collecting signatures. “Most people were very nice,” she said. “When one man refused, they got confused. They couldn’t understand someone would say no to them. He was an old guy and said if he had a sidewalk he’d have to shovel snow. They said, ‘We’ll shovel it for you.’ And he says, ‘No, you won’t.’ And they say, ‘Yes, we will.’ ”
Since the group home opened in September 2002, the three have worked hard to be good neighbors. “Tell the story how you called me about baking a cake for your new neighbors,” Ms. Kingsley said.
“I don’t know that story,” her son said.
“Yes, you do.”
“It’s coming back,” the son said. “We asked to bake a cake for the new neighbors across the street. That was nice of us, to give them a little treat.” “And you called me for help with the cake,” the mother said. “And I said, “All three of you are on a diet.’ ”
“Not for us,” her son said. “For the neighbors.”
“Chocolate cake,” Mr. Frost said.
“We all helped,” Mr. Gorodischer said.
“Three Musketeers,” Mr. Frost said. “Now four beautiful years living in this house.” “Almost five beautiful years,” Mr. Kingsley said.
“A very big environment,” Mr. Gorodischer said.
“Because we all three guys looked out for each other,” Mr. Frost said.
“And what is the meaning of brotherhood?” Mr. Gorodischer said. “We can stand tall and be united. Meaning we can win over Town Hall!”
Then someone said it was time, and the three piled out the door and down the stairs and squeezed into Ms. Kingsley’s sedan, heading for Town Hall to see if they could get themselves a sidewalk.
WHEN Jason Kingsley was born, on June 27, 1974, the doctors told Ms.
Kingsley and her husband, Charles, to put him in an institution. “They told me he wouldn’t be able to distinguish us from other adults,” she recalled.
“They said, ‘Never see him again, and tell your friends and family that he died in childbirth.’ They were so sure I would institutionalize him, they gave me pills to dry up my milk.’ ”
Ms. Kingsley couldn’t have known it then, but her son was born right at the great divide between the dark years, when the mentally retarded were hidden away in state institutions, and modern times, when most of those institutions have been shuttered and the developmentally disabled live among us, in supervised group homes and apartment programs.
Two years before Jason’s birth, in January 1972,
Geraldo Rivera had sneaked into Willowbrook, a snake pit of an institution on Staten Island that was home to 5,400 mentally retarded people. He filmed a ward of 60 emaciated children, many naked, some in straitjackets, surrounded by walls smeared with feces and supervised by a single attendant. His televised exposé led to a federal class-action lawsuit, which Gov. Hugh L. Carey could have settled by promising to improve Willowbrook. Instead, Mr. Carey set off a social revolution. In a 1975 consent decree, he pledged to move the residents out of Willowbrook and
into state-financed community housing. Decades later, Mr. Carey would say it was the one thing he’d done as governor that he could really hold on to.
At the time, there were 26,000 people living in 20 state institutions for the retarded in New York and just 1,570 in state-financed group homes.
Today there are 32,722 developmentally disabled New Yorkers in community residences, and fewer than a thousand ­ the most severely disabled ­ in a handful of institutions. In 1980, New Jersey had just 471 community beds; Connecticut had 963. Today New Jersey has 7,173, Connecticut 5,313. They are paid for by the states, and most are run by nonprofit agencies.
In 1974, the Kingsleys started on what was then a new parenting approach for children with disabilities called early intervention, which today has become standard practice. The infant is exposed to high levels of stimulus and physical therapy. Ms. Kingsley did Jason’s room in bright colors; she made a quilt for him with every patch a different material. “We surrounded him with motion and music, and we’d talk and talk to him,” she says. To “wake up his senses,” she filled a tub with Jell-O, and plopped him in.
“I had people tell me that he wouldn’t be able to read,” she recalled. “He started reading at age 4. It was so exciting. Everything they said he wouldn’t do, he was doing.”
Jason’s parents would take him to Broadway musicals, and he would memorize all the songs. To this day, if Ms. Kingsley challenges her son to adapt a show tune for his roommates, he’ll burst into a verse of “Singing in the Raymond” or “Some Enchanted Yaniving.”
The Kingsleys lectured at medical schools about the untapped potential of children with Down syndrome. “Doctors needed to see the old stereotypes didn’t apply,” she said. Ms. Kingsley is a veteran writer for “Sesame Street” ­ she has won 17 Emmys ­ and she pushed to have Jason on the air, so the public, too, would see. Jason appeared a dozen times, starting at 15 months (sitting on Buffy Sainte-Marie’s lap as she sang). At age 6 he did skits with Ernie, at 8 with Forgetful Jones.
Being pioneers, Ms. Kingsley and her husband (who died nine years ago) had no sense where the limits were, and it was hard when they learned. “I thought he was so smart, I thought I had fixed it,” she said. “But between 6 and 8 all the typical kids caught up and passed by. Typical kids got sophisticated and streetwise, picked up nuances about relationships that he could not.
“Jason was great at parlor tricks, he could count to 10 in 12 languages,” she said. But when she put him in a youth soccer league, he too often ran the wrong way. He mastered the mechanics of reading but struggled with comprehension. “He learned, but took longer than regular kids.” Regular kids would say, “Do we have to have him on our team?”
“I realized this was in fact a child with D.S.,” she said, “and as hard as I worked, it would not go away.”
Thanks to his mother’s background in television, the son had opportunitiesmost never get. At 10 he appeared on the TV show “The Fall Guy”; at 19, on “touched by an Angel.” With his mother’s help, he and his friend Mitchell Levitz wrote a book about Down syndrome, “Count Us In,” published by Harcourt in 1994.
But when Mr. Kingsley was no longer young and cuddly, things were harder. Having mingled with the stars, he grew impatient with mundane work. He had a job shelving videos at a library, and came up with his own system for reorganizing the collection. “It made perfect sense to him,” his mother says, “but nobody could find anything.” He now delivers mail in an office building, though he still lists his career goal as “directing animated feature films for the Disney corporation.” His roommate Mr. Gorodischer works in the mailroom of a law office. Mr. Frost is a clerk at Petco, specializing in fish and small animals.
The Kingsleys set their son up in his own apartment in the late 1990s, but over time, he became isolated, the apartment grew messy, and he stopped shaving and bathing regularly. “We were too optimistic,” Ms. Kingsley said. “He needed more structure.” The group home, which is run by Westchester Arc, a nonprofit agency, has counselors on duty from 4 p.m. to 8 a.m. to provide both oversight and routine. It’s a comfort for the mother, who will not live forever.
AS they walked into Town Hall, Mr. Gorodischer lagged behind, and Mr. Frost yelled, “Yaniv, move up, you’re with us.”
Inside, Channel 12 was waiting. “How long have you been fighting for this?” the reporter asked.
“This is our first time,” Mr. Frost said.
“But you have petitions?” the reporter said.
“We hope to win over Town Hall,” Mr. Frost said.
They launched into a “Three Musketeers” cheer ­ all for one and one for all! ­ that caught Channel 12 off guard. “Hold on, we missed that,” the reporter said. “Let’s do it again. Quiet … action.”
Before the meeting, Paul J. Feiner, the town supervisor, told the men he supported the sidewalk and credited them with forcing the Town Board to develop a sidewalk policy, but said it could be two years before there was any action.
They were first on the agenda, and it must have been more nerve-racking than they had expected, because, after a few hems and haws, Mr. Kingsley pulled out the speech his mother had written, and each of them read a few sentences.
“You should go home tonight feeling very, very proud,” Mr. Feiner said. “You’ve already accomplished a lot, and I’ll work hard to make your dream of sidewalks a reality.”
The whole thing took about three minutes, and soon the entourage was back at the group home with everyone gathered around the dining room table eating cake. While the guests chatted away, Mr. Frost and Mr. Kingsley slipped upstairs. It was getting late, and they had work in the morning.

World’s Oldest Organization on Intellectual Disability Has a Progressive New Name

AAMR’s name change draws applause from professional community and people living with a developmental disability
Washington, DC (November 2, 2006)-The American Association on Mental Retardation (AAMR), a 130-year old association representing developmental disability professionals worldwide, has changed its name to the American Association on Intellectual and Developmental Disabilities (AAIDD), establishing a new standard in disability terminology and making way for a more socially-acceptable way of addressing people with intellectual disabilities. The AAIDD is arguably best-known for officially defining the condition of mental retardation for the world, and its successful advocacy in abolishing the death penalty for victims with this condition in the United States. The name change will take effect January 1, 2007.
“This new name is an idea whose time has come,” says Doreen Croser, Executive Director of AAIDD. “Individuals with disabilities and family members do not like the term ‘mental retardation’ and their advocacy is encouraging political and social change at national, state, and local levels. Our members demanded that we keep up with times and they voted for this name change.” AAIDD members consist of faculty members, researchers, and service professionals working with people with intellectual disabilities in settings such as group homes, institutions, schools, hospitals, private clinics, colleges, and university centers.
The name of the AAIDD has been an ongoing source of contention in the disability community. While it is widely perceived that mental retardation (MR) is a condition that exists, it was also recognized that the term is prone to abuse, misinterpretation, and has devolved into an insult, especially for people with disabilities and family members. Further, the name AAMR was perceived as not in keeping with the progressive orientation of the information, products, and services offered by the Association.
The applause from the community of people with disability was unanimous once the name change was announced. “In taking ‘MR’ out of your name, you’ve set a precedent for it to be taken out of the classrooms, the doctors’ offices, personal case records, and eventually out of the vocabulary of people walking down the street,” says Amy Walker of Illinois Voices, a group working on behalf of people with intellectual disabilities.
Hank Bersani, current President of AAIDD explains, “Intellectual disability is a more accurate and modern term, and is also in keeping with terminology in Europe and Canada. We want to move away from any use of the word ‘retardation,’ while still allowing educators and other professionals to accurately describe the needs of the people they serve. Further, with the new name, we are reminding our members and the public that our mission has long included people with various developmental disabilities.” Most members of AAIDD work closely with people with developmental disabilities since conditions such as autism and Down syndrome often co-exist with an intellectual disability.
Despite the new name, the core mission of the Association still remains the same-to promote progressive policies, sound research, effective practices, and universal rights for people with intellectual and developmental disabilities. The AAIDD has changed its name four times since its inception is 1876. The Association last changed its name in 1987 to the American Association on Mental Retardation.
Apart from its definition and advocacy work, the AAIDD is well-known for its journals, the American Journal on Mental Retardation and Mental Retardation. In recent times, the Association has received critical acclaim for the Supports Intensity Scale, a planning tool that empowers people with intellectual disabilities to live a desired life by getting services based on individual needs, not deficits.
Learn more about AAIDD at www.aamr.org.
CONTACT: Anna Prabhala
Ph: (202) 387-1968, ext. 212
Email: annap@aamr.org

A Recipe to Fix School Funding

Andy Hall
Wisconsin State Journal
October 4, 2006
On a moonlit autumn evening, talk turned Tuesday to a “perfect storm” that might actually help Wisconsin fix its school-funding mess.
“Everything is coming together in an election year,” Thomas Beebe, outreach specialist for the nonprofit Institute for Wisconsin’s Future, told 17 Madison School District parents and activists who gathered at the Warner Park Community Recreation Center to discuss why Wisconsin schools always seem to be running out of money, and what to do about it.
The Institute for Wisconsin’s Future helped establish the Wisconsin Alliance for Excellent Schools, a coalition of 122 organizations and school districts, including Madison’s, focusing on school-finance reform.
Beebe, a former official at the state Department of Public Instruction, who served on the Fort Atkinson School Board, said prospects are brighter now than any time in the past decade because increasing numbers of the state’s 425 public school districts are reporting serious financial problems because of state revenue limits imposed since 1993.
In addition, Beebe said, a state task force headed by UW-Madison researcher Allan Odden soon will recommend major changes in how Wisconsin pays for its schools, and a bipartisan Wisconsin Legislative Council panel is exploring school financing for the first time in a decade.
A top goal, Beebe said, would be to radically shift Wisconsin’s philosophy. The education budget would be based on what’s needed to adequately educate all children, including those with special needs, rather than forcing schools to make do with whatever amount of money is available through a formula.
But to make the storm happen, Beebe said, the public will need to push political candidates and public officials into taking stands – including support of controversial proposals to boost school funding by raising the sales tax, eliminating some sales tax exemptions, raising corporate income taxes, and other means.
“I think Tom is exactly right,” Barbara Arnold, a former Madison School Board president who two years ago served on a governor-appointed task force on education reform, said after the session sponsored by the East Attendance Area PTO Coalition.
Matt Calvert, a parent of a Lapham Elementary first- grader and a Marquette Elementary third-grader, said he’s pleased with the schools and their teachers, but he’s troubled by discussions of reducing a music program and increasing class sizes.
“It’s getting to the point now that it’s pinching,” Calvert said.
Madison School Board member Carol Carstensen agreed that prospects for reform are brightening, but she also warned that big changes will require sacrifice.
“There’s no real solution without additional funds,” she said.