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Special Edition

Spectrum tate of the

Visit the site for additional articles, slideshows, multimedia stories and links to autism resources.

Published by the University of Connecticut Journalism Department

JOBS, PAGE 4

April 2011

HOUSING, PAGE 8

online

Hope for jobs blooms at ‘Roses for Autism’

More resources, stories available at StateoftheSpectrum.org

Their dream: Innovative housing for adults with autism

Innovative Guilford farm gives training and much more

Follow us on Twitter @StateofSpectrum or like ‘State of the Spectrum’ on Facebook

A better life at college-style community

‘Crisis’ of Need Looms Services growing, but many adults with autism get little

By Hugh McQuaid Staff Writer

I

t’s been called a looming crisis, an “autism tsunami” of need. It already affects thousands of adults with autism in Connecticut and will face thousands more children as they become adults. With a few exceptions, if you’re an adult with an autism spectrum disorder, there’s just not much the state can do for you. Outside of a limited program still in its infant stages, to even qualify for services through the Department of Developmental Services, adults with autism must also be diagnosed with some other intellectual disorder. While that may seem like a minor distinction,

Hugh McQuaid/State of the Spectrum A woman attending an autism meeting presents her child’s drawing of a puzzle to U.S. Rep. John Larson.

it creates a tear in the state’s social safety net, one that’s growing wider rapidly. And as occurrences of autism continue to rise, the number

of people slipping through that tear is growing with it. By the best estimates, one out of every 110 children will be diagnosed with disorders somewhere on the autism spectrum. “There’s a real crisis in this state,” said Lois Rosenwald, director of the Connecticut Autism Spectrum Resource Center. “We have families suffering tremendously and individuals suffering, individuals who will never meet their full potential because of a lack of services.” There’s nothing simple about the problem. Autism itself is not one disorder with a single set of symptoms. It’s literally a spectrum of conditions with symptoms so varied that people affected by it range from seeming typical, if a ADVOCATES, Page 3

Key players in this issue From providing housing and employment to working on legislation and programs, many across the state are preparing for an ‘autism tsunami.’ For more on resources and programs offered in Connecticut, look to www.StateoftheSpectrum.org.

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West Hartford All Seasons Academy | See story, page 8

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Hartford Department of Developmental Services and Rep. Larson | See story above Windsor Walgreens Distribution Center | See story, page 4 New Britian CW Resources Headquarters | See story, page 4

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New autism film is on a mission Wretches & Jabberers ‘stars’ charm in the Big Apple

Jessica Tommaselli/State of the Spectrum Tracy Thresher, who has autism, is one of the stars of Gerardine Wurzburg’s documentary ‘Wretches & Jabberers: And Stories from the Road.’

By Emily Constance Staff Writer NEW YORK – When you meet Tracy Thresher and Larry Bissonnette, there is a good chance they won’t talk to you, look at you or make eye contact. They might not shake your hand or walk with you, either. But the fact that Tracy and Larry don’t use typical means of communicating hasn’t stopped their voices from being heard. With the help of friends and professionals, Tracy and Larry are sharing their outlook on disability through the medium of film. Tracy, 42, and Larry, 52, have autism. And while that’s not the focus of their recent documentary “Wretches & Jabberers: And Stories from the Road,” it is what inspired Tracy and Larry to take part in the Gerardine Wurzburgdirected film. Ask Tracy to

Meet Larry and Tracy in Hartford

About State of the Spectrum

Many in the autism field predict a “tsunami” of need ahead for the large numbers of adults with autism and children who will soon be adults. They worry how society will provide the services they need for integrated lives. Where will the jobs and training come from? Where will they live after their parents die or can’t care for them? How will they learn skills they’ll need? Who will pay for it? The challenges are many, complicated by the staggering range of needs people have on the autism spectrum. “If you’ve met one person with autism,” people in the community say, “you’ve met one person with autism.” State of the Spectrum is a series of reports examining those issues by a team of journalism students at the University of Connecticut. They interviewed people with autism, parents, family members, political leaders, policy makers, experts, teachers, employers, aides, job coaches and others to offer a glimpse into the many challenges and some of the innovative ways people and organizations are trying to meet those challenges.

Officials: Program cuts won’t hurt services By Joseph Adinolfi Staff Writer

describe the documentary’s purpose and he will tell you it is “to move people’s knowledge of disability to a positive place.” The film follows Tracy and Larry as they embark on a multi-national mission to advocate for just and equal treatment of individuals with disabilities and for a reevaluation of the assumptions society makes about disabilities. The film is an Autism Society featured film and is being released in 40 cities in

HARTFORD – A successful and much-praised state program that provides a range of support services each year for up to 75 adults with autism in Connecticut is likely to lose a quarter of its $1.5 million budget. However, state officials say that the program’s enrollment will not decrease and the services it provides will not diminish even if the cuts in Gov. Dannel P. Malloy’s proposed budget are adopted. Anne Foley, undersecretary of the Office of Policy Management, explained that the program’s proposed $1.2 million budget for fiscal years 2012 and 2013 reflects how much the program actually spent in 2010.

PREMIERE, Page 2

PILOT, Page 5

on May 17! www.wretchesandjabberers.org


State of the Spectrum, Page 2

From Page One

April 2011

Premiere provides understanding, smiles FROM NEW, Page 1 April, Autism Awareness Month. The two appeared with the director at a public screening at the New York Disabilities Film Festival in February. Since the early 1990s, Tracy and Larry’s primary means of communicating has been typing. Both struggle to vocalize and act out their thoughts, so communicating can be difficult and overwhelming. When you encounter Tracy or Larry sans technology, things you’ve learned about body language can send the wrong message. A person’s facial expressions and body language give clues to what he or she is thinking and feeling, right? If someone stares blankly over your shoulder while you speak, the assumption might be that he or she is not listening, not interested, not “all there.” But then Larry, pacing alone, eyes unfocused, grabs an iPad and types something like “People all want communication.” Being on the autism spectrum is not an easy concept to convey, but Tracy does a good job simplifying it. Autism is like being “trapped in a body that didn’t work and not be able to let people know,” he says. In the film, Tracy and Larry get help as they challenge what people think they know about disability. Pascal Cheng and Harvey F. Lavoy made the film possible by accompanying the pair every step of the way. Cheng, an educa-

tional and communication specialist for the Howard Center in Burlington, Vt., has been Larry’s assistant since 1991. Lavoy, director of communication training and resources for Community Developmental Services (CDS) in Montpelier, Vt., has assisted Tracy since 1994. International Crusade The film follows Tracy and Larry to Sri Lanka, Japan and Finland where they meet with other individuals with varying degrees of disability and invite them to join in their crusade against prejudice. We are introduced to Antti Lappalainen, 21, and Henna Laulainen, 23, in Finland; Naoki Higashida, 16, in Japan; and Chandima “Chammi” Rajapatirana, 35, in Sri Lanka. Chammi often walks away. Henna is extremely reserved. Antti is completely non-verbal. Naoki jumps -- a lot. In a spirit of camaraderie, the group embraces the darkly comedic labels “wretches” and “jabberers,” coined by Antti on his typing device, and agrees to embark on an international tour aimed at providing insight about autism and other disabilities. Their message is simple: They do not have a disease and they are not stupid. In the film, Larry recounts his experience being institutionalized from age 8 to 23 and not knowing what he did wrong. While there’s been progress in disabilities aware-

Jessica Tommaselli/State of the Spectrum Tracy Thresher communicates via his keyboard and computer screen to the audience at the New York premiere of ‘Wretches & Jabberers: And Other Stories from the Road.’

ness since then, Larry and his contemporaries want to ensure that people with disabilities will not have their youth taken from them, misunderstood, rejected and secluded as Larry was. Like a Reunion The New York screening of “Wretches and Jabberers” was held at the Manhattan Jewish Community Center. Every seat in the auditorium, roughly 250, was occupied by guests of every shade, age and background. The film starts with Pascal looking for Larry’s passport in an airport and Tracy leaving his luggage on a conveyor belt. They’re

about to board the first flight of many that will connect them with their contemporaries, who also struggle with communication. Much of the film focuses on the comrades typing to one another across tables, as Tracy and Larry introduce themselves and explain their mission to their new friends, one letter at a time. After the screening, Tracy, Larry, Pascal and Harvey joined the audience for a Q&A and were greeted with an explosive standing ovation. Two iPads were connected to a large projector so that members of the audience could take turns asking

questions, and Tracy’s and Larry’s responses could be projected onto a large screen. “Presume competence” A mother in the audience raised her hand to read her son David’s question. He wanted to know what it was like making the film and what advice they would have for people interacting with those who have disability. Tracy typed, “For us, David, this was an act of the heart and the hand. Without the heart, it wouldn’t have worked. My advice is simple: presume competence.” Another woman asked

about their plans for the future now that the film is complete. “Get this movie out to the world so that everyone is moved and starts a dialogue with gyrating, huge shifts in people’s attitudes,” responded Tracy. “And I am looking for ‘Wretches and Jabberers Part Two’ taking on the world.” Of his new fame, Larrytyped: “My awe about this fame is like maple syrup stewing like simmering, sweet wine, long and deep in appreciation of our work.” Then, referring to the soundtrack composer, he added, “And J. Ralph, you will hit Top 40 now. “ After the Q&A it was time to mingle. Members of the audience joined Tracy, Larry, Pascal and Harvey on the floor, but getting personal was more challenging than some had anticipated. Person after person approached Larry, but even an entire film’s worth of advice and background could not prepare them for how to respond when Larry ignored their outstretched hand or walked away mid-sentence. But when Pascal was nearby with the iPad, Larry typed confidently and without hesitation, responding to every question. Asked where disabled people have the potential to end up, Larry typed, “To the moon if we belong to school of competence presumption.” Emily.Constance@UConn.edu

State of the Spectrum staff and collaborators Faculty Advisors

Marcel Dufresne Co-director Associate Professor of Journalism

Rick Hancock Co-director Assistant Professor in Residence

Joseph Adinolfi Staff Writer

Emily G. Constance Staff Writer, Videographer

Lindsey Cunningham Staff Writer, Multimedia

Steve Hamel Staff Writer

Valeria Lacourciere Staff Writer. Multimedia

Hometown: North Haven, Conn. Major(s): Journalism, English Career goal: Investigative reporter.

Hometown: New Orleans, La. Major(s): Journalism Career goal: To cover rally and gymkhana motorsport events or to write for The Onion.

Hometown: Marlborough, Mass. Major(s): Journalism Career goal: Television news producer.

Hometown: Ledyard, Conn. Major(s): Journalism, Political Science Career goal: To cover sports for a national publication.

Hometown: New Britain, Conn. Major(s): Journalism, Political Science Career goal: To continue reporting on topics I care about.

Caitlin Mazzola Print Designer, Videographer

Hugh McQuaid Staff Writer, Photographer

Chris Perez Staff Writer, Photographer

Alessandra Petrino Producer, Researcher

Rebecca Radolf Staff Writer

Hometown: Milford, Conn. Major(s): Journalism, Communication Career goal: To write profiles and investigative news for Rolling Stone Magazine.

Hometown: Stafford, Conn. Major(s): Journalism Career goal: To continue working in journalism.

Hometown: Croton on Hudson. N.Y. Major(s): Journalism Career goal: To cover baseball for major newspaper.

Mike Ryan Photographer, Videographer

Bridget Shannon Social Media Coordinator

Kelly Sullivan Website Designer

Hometown: Londonderry, N.H. Major(s): Journalism, Communication Career goal: Sports or entertainment journalist in or around Boston.

Hometown: Middlebury, Conn. Major(s): Journalism, Anthropology Career goal: To write for a magazine or online publication in the food or travel industry.

Hometown: New Fairfield, Conn. Major(s): Journalism, English Career goal: To write for a women’s magazine, preferably Cosmopolitan.

Hometown: Avon, Conn. Major(s): Journalism, Psychology Career goal: Broadcast (behind the camera) or magazine writing.

Joseph Hilliman Print Design Advisor Lecturer

Maeve Ryan Technical Advisor Instructional Developer

Hometown: Glastonbury, Conn. Major(s): Journalism Career goal: Web producer for a news organization.

Jessica Tommaselli Photographer, Photo Editor Hometown: Guilford, Conn. Major(s): English Career goal: Photographer for Spin Magazine.

Alexander Villegas Staff Writer Hometown: San Jose, Costa Rica Major(s): Journalism, Philosphy Career goal: Essayist.

This project was supported by grants from UConn’s Office of Undergraduate Research. Special thanks to The Chronicle Printing Co. of Willimantic for printing this edition.


April 2011

From Page One

1-1.5 Million

The number of Americans with an autism spectrum disorder.

– The New England Center for Children

$3.2 Million

The average lifetime cost to care for an individual with autism.

–The Centers for Disease Control and Prevention

State of the Spectrum, Page 3

1 in 110

The number of children in the U.S. reported to have an autism spectrum disorder.

– Autism Society

Advocates address the coming ‘tsunami’ FROM CRISIS, Page 1 little quirky, to requiring care 24 hours a day. There’s a saying in the autism community that focuses that reality. It goes something like, “Once you’ve met one person with autism…you’ve met one person with autism.” Developing services to address such a range of symptoms is a daunting task. If you add to the equation a state fiscal crisis and you’ll begin to get a picture of the situation. As complicated a topic as autism is, the state’s landscape of help and guidance for those affected is equally complex. On any given day, a parent of a child on the spectrum looking for assistance may make calls to several state agencies – Department of Social Services, Department of Education, Department of Mental Health and Addiction Service.

For more on this story, visit www. Stateofthe Spectrum.org

Darlene Borre of West Hartford said that when she first started navigating the system to find autism services for her son, the Department of Children and Families, which normally handles family crises like abuse, was the primary contact agency. But in 2008 it began phasing out its limited autism services. Borre said her son, age 9, now receives services from DDS. A loose network of advocacy and support groups exists throughout the state but they vary dramatically in their missions and locations. Those advocates say many regions of Connecticut lack enough trained people to provide medical care, jobs and life-skills training, and other services needed to help adults with autism live independent and productive lives. As limited as services are, they are an improvement over what existed in Connecticut just five years ago when there were no state services for adults with autism. Zero. “We were very concerned with adult services because nothing existed,” Rosenwald said. “They fell off the face of the world.” Connecticut, like every state, is federally mandated to provide special education services for students with disabilities. However, when most students with autism graduate from high school or turn 21, whatever services they receive abruptly end. Larry Widem lives in West Hartford with his two children who are both on the autism spectrum. His oldest, Samuel, is now in high school where he’s making great strides. At an Autism Speaks meeting with U.S. Rep. John Larson, Widem said

that during an art class, a teacher asked Samuel to work on shading. Though he had no idea what shading was, Samuel got himself to a computer and used a search engine to make sense of it, his father said. Then Samuel began shading. Samuel demonstrated problem-solving skills and a high degree of self-sufficiency. Unfortunately, his access to programs where he can enhance those abilities is limited. “The problem Samuel faces is, at age 21, his right to an education ends,” Widem said. First Services In 2006 the state’s legislature began to take steps to address the issue. Rep. Cathy Abercrombie, D-Meriden, who works closely with advocates on autism issues, recalled the state’s lack of services at that time. Lawmakers had expanded some medical insurance coverage for people with autism, but the state still had no programs for adults. “At that time we were one of only three states that did not have any services for adults who are on the spectrum if they did not have mental retardation,” she said. A group of legislators pushed to fund a pilot program to address many of those service issues. A pilot program was rolled out that year to 52 adults in New Haven and Hartford counties, providing training and educational services, even basic self-care programming aimed at reducing the responsibilities shouldered by caretakers. Individuals were assigned case managers and coaches for social and occupational training. Over a year into the program, a research team from the University of Connecticut Health Center found it had successfully met most of its goals. “Not only are many participants and their families benefiting significantly from the services they receive, the costs overall are described as relatively low,” the team’s report read. The program became a permanent fixture at DDS at a cost of about $1.4 million a year, and a Division of Autism was established. Armed with the lessons learned from the new program, the state seemed poised to offer quality services to at least a segment of the population. Lawmakers from Southeastern Connecticut have even proposed legislation to expand the program to that region. However, there are still significant barriers to offering the same services to that segment statewide, funding not least among them. While advocates are pushing to expand the program to cover more clients, Gov. Dannel P. Malloy’s proposed budget for fiscal year 2012 through 2013 recom-

mends cutting about $340,000 from the program’s budget. That amount would represents nearly 25 percent of the program’s funding. State officials at the DDS and Office of Policy and Management say that the program’s enrollment will not decrease and the services it provides will not diminish even if the cuts in Gov. Malloy’s budget are adopted. Despite the state’s fiscal woes, some argue that spending more on autism services now will save the state money in the long run. “We can potentially save money if we’ve given them the hope and care early on rather than be reactionary,” Sen. Rob Kane, R-Watertown said. Other Options There are other efforts in the General Assembly to improve the state’s ability to fund autism services. Advocates have long pushed the state to apply for a waiver of Medicaid rules that they say would help expand autism services. Now, some legislatures are pressing the commissioner of the Department of Developmental Services to seek the waiver, which would have the federal government reimburse the state for half of every dollar spent on autism services, according to Sara Reed, director of the Autism Society of Connecticut. While a positive step, the waiver would do little to expand programs unless the state spends more money up front, a tall order in the current budget climate, said Reed. Also, getting the waiver application in place will take some bureaucratic maneuvering through a number of state agencies.

“There is going to be this absolute deluge of children with autism becoming adults and the system in Connecticut is not set up to handle it.” – Darlene Borre, Parent and advocate Even if funds were available to provide more services, Connecticut doesn’t have enough trained professionals and facilities, advocates say. Rosenwald, who sat on the planning board for the pilot program, recalled that available resources factored into the decision to place the program in Hartford and New Haven counties where support resources already existed. Not much has changed, she said. Autism advocates make up a loose, sometimes fractured, network of private and nonprofit groups that pushes for change and helps parents navi-

Graphic by JOSEPH HILLIMAN/State of the Spectrum

photos by: hugh mcquAID/State of the Spectrum (Left) Advocates of autism awareness gather at an Autism Speaks meeting; (Right) Rep. John Larson is one of a group of lawmakers working to push through necessary legislation.

gate the system of available state services. At the state capitol, they differ from many others presenting their needs to the legislature. They are prohibited from lobbying by their nonprofit status and they seldom have the same resources as registered lobbyists, who are at the capitol regularly, know the landscape, and are often well-financed. Most autism advocates are parents with other jobs or caring professionals who can only help on a limited basis, Rosenwald said. Lack of money is a major challenge, she said, , but what they lack in funds and time, they make up for in passion and commitment. “We don’t have much money, all we have are numbers,” she said. “But we won’t go away. Good times, bad times, we won’t go away.” Alternate Solutions Some have begun trying to find solutions outside the state’s financially crippled government. A flier for All Seasons Academy asks, “What will happen to my child with autism when I am no longer able to care for him or her?” That question led Darlene Borre to establish the non-profit group to create a campus community designed to provide housing for adults with autism and help them lead productive lives. As Borre struggles to find the time and resources to make the All Seasons cam-

pus a reality, parents around the state are asking the same question – what happens to my child when I’m gone? “Opening Doors,” a 2008 collaborative study involving Arizona State University, found that 80 percent of people with autism between ages 19 and 30 live at home with their parents or guardians. “It keeps me up at night,” Shannon Knall, of Autism Speaks, said. “There’s a kind of grim saying in the autism world, ‘As parents, we can never die because there’s no one to take care of our kids.’” Knall said she feels that if given the right resources, her son could be a productive member of society. But right now, that’s a big “if.” Borre’s All Seasons Academy sounds ideal on paper, Knall said, but it would also take more than one campus to serve the large numbers of needy adults on the spectrum. “That place can’t be big enough. I mean, if that happens there will be a waiting list in to Texas,” she said. While it’s clear there aren’t enough services to help every adult in the state with autism, it’s less clear what will happen if some of them do not get those services. For one thing, there is no consensus on how many adults with a spectrum disorder live in the state. Some speculate many have never been diagnosed, while some who are diagnosed may fall off the grid after they leave the education system. Some may become

wards of the state, advocates say, while others are sent to states where more appropriate psychiatric care is available. It’s even suggested that some on the spectrum eventually wind up in the criminal justice system. But Dr. Daniel Bannish, state Corrections Department’s director of health and addiction services, said his agency doesn’t have statistics on inmates on the spectrum because it’s relatively rare. That’s not to say there are none. Bannish noted that people with autism sometimes thrive in predictable, structured environments and prisons are certainly structured. “It’s possible for somebody to kind of hide out in our facilities without anyone ever noticing they have a problem,” he said. Wherever they end up, the population with autism is poised to grow rapidly in the coming years. According to the “Opening Doors” report, of the 1.5 million Americans with autism disorders, over 80 percent are younger than 22 years old. Borre said the question now becomes will the state find a way to help them now or take a reactionary route that will cost several times as much somewhere down the line. “There’s going to be this absolute deluge of children with autism becoming adults and the system in Connecticut is not set up to handle it,” she said.

Hugh.McQuaid@UConn.edu


State of the Spectrum, Page 4

Jobs

April 2011

Hope for jobs blooms at ‘Roses for Autism’ Innovative Guilford farm gives training and much more By Steve Hamel Staff Writer GUILFORD – When Steve Packard gets to work each morning, he first greets his co-workers, then heads to his computer to track sales, orders and inventory in an ongoing effort to expand his company’s customer base. Packard, 28, has Asperger’s syndrome, but that has not stopped him from becoming a vital member of the Roses for Autism staff at Pinchbeck’s Rose Farm in Guilford. Like many people with Asperger’s, Packard has an intensely focused interest. His is in computers, and he excels at running Roses for Autism’s computer system. Since being hired last June, Packard has become an e-marketing specialist, helping the farm take its operation online over Christmas in an effort to expand the business, which previously had been strictly local. Today, Roses for Autism can deliver anywhere in the country and has shipped to as far away as Alaska. To anyone driving down Route 1 in Guilford on a winter day, Pinchbeck’s Rose Farm looks like any other farm. Two shimmering greenhouses at the only rose farm still operating in New England are visible through the leafless, snowcovered trees separating the farm from the road. Pinchbeck’s first opened in 1929, but went out of business in 2008 after seeing its prices undercut by South American competitors. A year later, the farm re-opened as Roses for Autism.

A Higher Calling And while selling roses is still a priority, the non-profit operation serves a higher calling as a vocational training program that hires adults on the autism spectrum and teaches them how to thrive in a work environment. In the past, Packard has had difficulty finding a good job and was unemployed before joining Roses for Autism. He has previously worked as an administrative assistant for a company that is now out of business and has done freelance network support for various companies. Unlike his previous employers, Roses for Autism provides a very supportive and structured workplace, Packard said. “There’s not one single significant thing that makes it different here,” Packard said. “It’s just a totally different (work) environment from most places.” Walking past Packard and his computer, is Chris Roos preparing roses for delivery. Roos, 21, is another employee going through the program. He found his niche grading roses in the packing room, fitting them into the proper packaging based on the length of their stems. “Since I’ve been here my life’s changed,” Roos said. “I just get into a routine every day and I kind of know how everything works around here.” The confidence Roos has

MIKE RYAN/State of the Spectrum Pinchbeck’s Rose Farm employs all ages on the spectrum, and workers go through an assessment program to determine how many hours they will work and how much time per day. Workers like Chris Roos, 21, are on the higher-functioning end of the spectrum. He works in the packing room.

gained working at Roses for Autism convinced him to take classes at Gateway Community College in New Haven, where he is studying liberal arts. He hopes eventually to transfer to a four-year school to continue his studies. Roses for Autism is the brainchild of Jim Lyman, who was concerned about his autistic son Eli’s future chances of securing employment as an adult. Having worked for the familyowned Lyman Orchards in Middlefield, Lyman knew local farms were struggling to find employees, so he approached owner Tom Pinchbeck about re-opening the rose farm as a train-

ing program to teach adults with autism skills that would help them find jobs in agriculture. Eli, now 19, will likely begin working at the farm this summer. Special Recognition Because of its commitment to teaching transferable job skills to adults on the autism spectrum, Roses for Autism was chosen to be the featured employer at Autism Awareness Day on April 4 at the State Capitol. The company operates out of a 50,000-square-foot greenhouse, the smaller of two. Inside, roughly 32,000 rose bushes grow yearround. This year the farm

expects to produce nearly one million roses. The farm also grows lilies, which are packaged and sold with rose arrangements. At any time, the program has up to 10 part-time employees on the autism spectrum. Lori Gregan, Roses for Autism’s retail operation manager, says the goal is to increase that number to between 25 and 30 within a year. If the operation is successful, they could open the larger 100,000-square-foot greenhouse and add more staff. “By providing employment for people on the spectrum, Roses (for Autism) is creating the type of resources most needed by our community,” said Sara Reed, executive director of the Autism Society of Connecticut. Reed lists meaningful work, participation in community life and the ability to live successfully and independently as resources Roses for Autism provides. Roses for Autism is the first business venture of Growing Possibilities, a division of a non-profit organization called Ability Beyond Disability in Bethel. Typically, Roses for Autism’s new employees start out performing a single task, like planting lily bulbs or working in the packing room. “We start where they’re comfortable and then just kind of add stuff to their pallet of talents, so the end result would be that everybody who comes through my door can do every job here just like me,” Gregan said. Laminated cards inside the greenhouse and the packing room remind workers how to perform their jobs, which include rose cutting, bulb planting, packing, retail sales and e-marketing.

“I say it’s magic. They have all been so successful.” – Lori Gregan, Retail operations manager

Learning Social Skills Along with job skills, there is an emphasis on teaching social skills “because that’s usually where the disability falls (for people with autism),” Gregan said. “We teach them how to come to work on time, how to socialize, how to have lunch with each other.” So far, two of Roses for Autism’s employees have moved on to other opportunities. One is a park ranger, while the other is attending Unity College in Unity, Maine. Gregan hopes some of the farm’s current employees will be able to find employment elsewhere this spring. When they do, Roses for Autism will set them up with job coaches to help them settle into their new workplaces. That also would make room for other workers at the Guilford farm. Gregan says all of Roses for Autism’s employees have made tremendous progress since they began working at the farm. They have shown improved social skills, nonverbal communication skills and flexibility within the workplace, all of which are critical to job success and can be transferred to other work environments. “I say it’s magic,” Gregan said. “They have all been so successful.” Stephen.Hamel@UConn.edu

Matching people with jobs for 47 years By Valeria Lacourciere

Staff Writer

NEW BRITAIN – It’s Kim’s birthday and she is spending it repackaging binder clips on the first floor of CW Resources, Inc., a not-for-profit agency that has trained and employed people with disabilities for 47 years. On a day in March, Kim takes a neat white box filled with clips from a stack on the floor. Then she grabs another small, nicely labeled box and empties the contents of the first box into it. Her job is to shake up the binder clips in the new box, close it up and put it aside for shipping and packing. Kim, whose mother prefers she only be indentified by first name, has autism and works alone with a job coach in an otherwise busy workroom. Her co-workers, who have other disabilities, are grouped together at other tables working on orders. CW offers Kim a chance to earn a competitive wages and work in an environment that accommodates her needs. As of January 2011, CW workers earned an average of $11.81 per hour at various worksites in seven states, according to the staff. Kim’s mother visited at least five organizations that provide job services before she arrived at CW. Kim was diagnosed with autism at age

Some with autism find work at CW Resources

valeria lacourciere/State of the Spectrum Left: Greg Green, 22, works on a rain barrel used for water collection at the CW Resources redemption center in Naugatuck. Right: Preparing food for cafeterias and other food service establishments is one of the jobs the agency trains workers to do.

one and, like others with autism, she is sensitive to most textures. She also has pica, a disorder characterized by craving non-food substances. The disorder makes it difficult for her to work at many job sites, said her mother. CW was able to accommodate the disorder by giving Kim constant supervision.

Kim is one of the nearly 700 people with disabilities or economic disadvantages employed at CW’s community worksites around Connecticut, according to its annual report. The agency was incorporated in 1964 under the name Constructive Workshops, Inc., as a vocational rehabilitation

agency that placed people in assembly, sorting, packing and other light industrial activities back when major factories such as Stanley Works and the New Britain Machine Co. were still industrial dynamos. Today, CW Resources continues to train and place people in such jobs

across Connecticut and other states. Placements have expanded to include retail, janitorial and food service jobs. CW clients have found employment with companies such as Marshalls, Wal-Mart, and Big-Y, or at placements at one of six CW worksites Connecticut.

A Small Percentage CW offers job support services to people with a wide-range of disabilities, but clients with autism remain a minority, less than 10 percent, said Sandra Lavoy, vice-president of community rehabilitation services. Lavoy said additional funding through state Department of Developmental Services (DDS) has made it possible to increase the number of clients with autism. Some clients come to CW on their own for evaluation and job placement, but most are referred by the DDS or other state agencies. The DDS typically refers clients with IQs lower than 70, and because many people with autism have higher IQs, they were previously not eligible for a DDS referral and funding, said Lavoy. Kim was not referred by DDS but an agency social worker suggested CW to her parents, said Donna Wright, her work coach. Other worksites her parents looked at would have required Kim to participate in arts and crafts, which she hates, her mother said. Another problem was downtime. Kim’s mother feels that Kim needs something to do with her hands and other sites did not constantly occupy their clients. Kim’s mother says she is

VARIETY, Page 7


April 2011

Jobs

State of the Spectrum, Page 5

Walgreens’ center puts people to work Company’s practices catching on with others vice president of distribution and logistics. Lewis’ son, Austin, has autism, WINDSOR – Inside the Wal- which motivated Lewis to greens distribution center provide jobs for qualified on International Drive, Paul candidates with disabilities. Mazzoli is hard at work in the The Windsor center became “detrash” department, where the second facility to hire a steady stream of packages workers with disabilities have to be opened and their when it opened in 2008. contents removed. Today, Now every Walgreens disMazzoli is slicing open pack- tribution center in the U.S. ages with a specially marked and Puerto Rico hires a cerbox cutter and removing tain percentage of employClairol hair coloring from ees with disabilities. its packaging for shipping to Walgreens retail stores Managing his stress throughout the Northeast. Prior to joining WalLike some of his co- greens, Mazzoli worked at workers, Mazzoli has an Stop and Shop, but lost his autism spectrum disorder. job because his employer When the distribution cen- did not want to deal with ter opened in May of 2008, the behavioral problems asthe goal was for one-third sociated with his disability. of the center’s workforce to Wendover says Mazzoli has be made up of individuals a tendency to yell, swear with disabilities. According and get very aggressive to outreach manager Joe when he feels stressed. Wendover, the facility has Watching Mazzoli work, surpassed that goal, as 47 one’s eye is immediately percent of its 430 employees drawn to his unusual box have some sort of cognitive cutter. Spray painted with or physical disability. blue and yellow stripes and In 2010, Walgreens adorned with an image of ranked second, behind the Marvel comic book Hewlett-Packard, on CA- character Wolverine, MazREERS & the disABLED zoli’s knife matches his tmagazine’s survey of the top shirt, which features a Big 50 employers who provide Dogs parody of Wolverine. the most positive working To help Mazzoli deal environment for people with stress, Wendover had with disabilities. five box cutters painted Nineteen of the center’s and decorated with differemployees have a disabil- ent characters including ity that falls on the autism Wolverine, Yoda from Star spectrum and reminders Wars, Link from the Ninof Walgreens’ commitment tendo video game “The to autism awareness are Legend of Zelda,” and Ironeverywhere, from a large hide from Transformers. wooden sign at the front Mazzoli enjoys video games gate in the shape of a puz- and movies, so the ability zle piece, the international to choose which character symbol for autism, to the he uses on any given day Autism Speaks logo on the makes his job more fun. door to Wendover’s office. Wendover also gave MazWalgreens first began hir- zoli “break cards” depicting ing workers with disabilities Yoda and a character from in June of 2007 at its distri- the television series “Futurbution center in Anderson, ama.” At any time, Mazzoli S.C., at the suggestion of can hand one of the break Randy Lewis, the company’s cards to his manager if he

By Steve Hamel Staff Writer

feels stressed and take a two-minute break to calm down. As a result, Mazzoli’s angry outbursts occur less frequently than when he began working at Walgreens in January 2009. Working Side by Side At Walgreens, workers with and without disabilities work side-by-side, earning equal pay and equal benefits. The Windsor distribution center services over 600 stores from Manhattan to Maine, and Wendover says its unique environment has created a more dedicated, loyal and honest workforce that has made it the most successful Walgreens distribution center in the country in terms of productivity, accuracy, morale and safety. “It’s about this culture that we’ve built,” Wendover said. “And that’s what’s built the morale and made it a really great place to work.” That culture is evident watching Wendover walk from station to station, greeting employees by name and asking them how their day is going. Banners with inspirational quotes like, ‘If opportunity doesn’t knock, build a door,’ hang from the walls and a positive energy seems to radiate throughout the building. Each work station is equipped with a monitor, which displays two bars that light up green when a worker is meeting or exceeding Walgreens’ standards for productivity and accuracy. The bars turn red when productivity and accuracy rates fall below those standards. The display is very visual, making it easy for workers to see if they need to improve their rates. Beyond job training, which is handled by a nonprofit organization called Community Enterprises, all

MIKE RYAN/State of the Spectrum The puzzle piece sign shown above – a beacon for autism awareness - stands outside the Walgreens distribution center in Windsor, Conn., where 19 of the employees have a disability that falls on the autism spectrum.

prospective employees, disabled or not, go through two hours of disability sensitivity training with Wendover. Wendover also does what he can to help his employees outside of the workplace. “Sometimes it’s dating advice, sometimes it’s how to make friends, sometimes it’s places to go shopping for clothes or food,” he said. “It just really depends on the

support network that they have at home. If they’re living with their family, there’s little that I’m going to have to give them advice for. But there are some folks that live in group homes and staterun facilities. They are lacking some things at home.” Employees were too busy working to be interviewed, but Wendover shared his thoughts on a

few members of the Walgreens staff who have autism spectrum disorders. Tim Glynn , like Mazzoli, unpacks product cases in the detrash department. He is very independent and recently bought his own condominium, but his disability affects his social skills and he has had difficulty

EMPLOYEES, Page 7

Autism program advocates hope to see expansion FROM OFFICIALS, Page 1 Though the current budget is $1.5 million, most participants, for a variety of reasons, do not use all the money set aside for them each year, Foley said. For instance, some need to take time off because of illness or other reasons. The Department of Developmental Services, which administers the program, offered the same explanation for why it has not spent all the funds allotted. Despite assertions that the cuts will not impact the quality and scope of the program, Sara Reed, the executive director of Autism Society of Connecticut, said the program is not serving enough people as it is. It currently serves between 65 and 75 people a year from New Haven and Hartford counties. Once accepted into the program, participants can remain enrolled as long as they continue meeting the eligibility requirements. New slots only open when a participant leaves. Reed, who is a member of the program’s advisory council, said it would be worthwhile to examine why so much of the program’s total budget isn’t recycled back into the program.

But she noted that the services provided differ from participant to participant based on need, and that this flexibility is one of the program’s strengths. The DDS autism program began as a pilot program and was later made permanent by the state legislature. Advocates and researchers who evaluated the autism program agree it’s been successful at such things as helping participants improve their social skills and training them to get and keep jobs. Securing more money for the program has sometimes been a tug of war between advocates who want the program to serve more adults statewide and a government trying to evenly spread the budget reduction burden. The proposed cuts come at the same time a state legislator and autism advocates from southeastern Connecticut are pushing a bill that would expand the program to that part of the state. A 2008 study by the Center on Aging at the UConn Health Center reported a marked improvement in participants’ ability to be independent. Service coordinators interviewed during the outcome study reported that 87 per-

cent of the participants met or partially met their goal of improving life skills, 65 percent of the participants had at least partially met their goals for employment, and 95 percent achieved their goal to gain community experience. In an interview with Reed, posted on DDS’s website, a participant named Joseph describes how the program helped change his patterns of behavior, and helped him lead a more independent and fulfilling life.

“A giant rose has bloomed in my life. I feel like a celebrity.” Paul, Pilot Program Participant Joseph had recently lost his job as a night auditor and front-desk clerk at a hotel, a job he had held for 10 years before joining the program. Like many people on the autism spectrum, Joseph tended to resist change. He describes wasting money on car repairs and movie rentals at the local video store. With

encouragement from the team of therapists the program provided him, he was able to overcome his aversion to change and save money. He explains how he now has a new car, a Netflix subscription, and a job at the Walgreen’s distribution center in Windsor, which he got through the program. Paul, another participant, said the program improved his self-esteem. He now feels more comfortable interacting with people, and enjoys spending time with the new friends he has made. “A giant rose has bloomed in my life,” Paul tells Reed on the video. “I feel like a celebrity.” The initial cost to the state to provide services to individuals may seem high, advocates say, but the program will save money in the long run if it can prevent adults who otherwise could not live independently from becoming wards of the state. Advocates in southeastern Connecticut hope the program will someday be expanded into New London County. Kathy Greene and Vita Weyman of the Lighthouse Voc-Ed Center in Old Mystic joined state Sen. Andrew Maynard, a co-sponsor of Senate Bill No.

529 at a Public Health Committee hearing in March to describe their experiences working with adults and children on the autism spectrum. They told the committee about how thousands of capable adults depend on the support of their family because the help they require to learn to live independently is unaffordable, and there is no state assistance available to many of them. “It just has become increasingly clear that we are failing to support the efforts of those folks in our region,” Maynard said. “Services in the southeastern part of Connecticut are virtually non-existent.” The scenario is common in Connecticut. People under the age of 21 qualify for transitional support services through public school special education programs, while many adults occupy a gray area. The Department of Mental Health and Addiction provides services for people with intellectual disabilities, but the DDS autism program is the only state resource for adults with autism who do not also have an intellectual disability. The program could receive some financial assistance from a federal Medicaid waiver that Kathryn

Reddington, DDS’s autism coordinator, hopes will be available by August. Under the waiver, the federal Center for Medicaid Services would reimburse the state for half the money it spends on the program. Both Medicaid and the state legislature must approve the waiver. Advocates note that money is not the only obstacle in Connecticut. In many parts of the state, there is a shortage of trained specialists who understand ASD and the range of symptoms. Despite its limited scope, the program has been successful enough that other states have contacted DDS to learn more about it. It remains the only service in Connecticut for adults with autism. “I think it’s doing the best it can,” said Shannon Knall, the advocacy chair for the Connecticut chapter of Autism Speaks. “Would I like to see it funded more? Yes. Would I like to see more employees involved? Yes. But I think that considering the circumstances, it’s operating at the best of its ability.”   Hugh McQuaid contributed to this story

Joseph.Adinolfi@UConn.edu


State of the Spectrum, Page 6

Housing/Life Skills

April 2011

Successful programs carry high price tag Ineligible for aid, families sacrifice to afford Vista Vocational By Rebecca Radolf Staff Writer WESTBROOK – As a young student Jeff Durnin, who has autism, had been in a variety of teaching settings before his parents enrolled him in a special needs school, where he thrived. As he approached age 21 and the end of his formal schooling, it was suggested that his progress could continue at Vista Vocational & Life Skills Center, a Westbrook-based program that provides adults with autism and other mental disabilities training and skills to live independently with minimal help. After more than a decade living, working and learning at Vista, Durnin, 32, now lives on his own at an apartment complex in Clinton, cooks for himself, and works at Wal-Mart in Old Saybrook. On weekends he goes to the movies with friends and has a girlfriend, Anna, of 7 years. Jeff ’s story is not unlike that of many adults on the autism spectrum who can, with the right help, learn to live independently. But many don’t get the chance to attend a program like Vista because of the price tag. The cost of Vista is $63,000 a year for the first two years, not unlike the cost of attending similar successful programs for adults with autism on the higher- functioning end of the spectrum. And for that population, there is not much financial help. When a person with autism turns 21, he or she immediately stops receiving funding through the public school systems. If the child doesn’t qualify for funding from the state Department of Developmental Services or other

agency, usually because of another disability, families must find a way to pay for services or their son or daughter may have little to do but spend their life at home. Many Don’t Qualify “The DDS will say they can help Jeff, but there’s nothing there for him,” said Ellen Durnin, Jeff ’s mother. “When we went through the process, you had to have an IQ below 70 if you wanted any kind of benefits.” People with autism with an IQ of 69 or below don’t qualify for state assistance through DDS. Without some sort of financial aid, many families find it difficult to get adults services.

For more on this story, visit www. Stateofthe Spectrum.org

“It’s challenging. It’s a lot of money every year,” said Durnin. “We’ve had to make certain decisions with our careers to provide for it, but we believe it’s the right thing for Jeff.” Helen Bosch, executive director of Vista Vocational & Life Skills Center, described the IQ cutoff that disqualifies families like the Durnins as unfair and arbitrary. Connecticut and Mississippi are the only two states with that particular

Caitlin Mazzola/State of the Spectrum Shown above is the Entrance Program Residence of Vista Vocational Life Skills Center in Westbrook. The building hosts participants in a dorm-style setting. The center has transitional apartments in Guilford for the second phase of its life skills program, and houses its Outreach participants (the third phase of the program) in condominiums in the Guilford and Clinton area.

marker, she said. “The federal definition of what a developmental disability is doesn’t have an IQ component to it,” said Bosch. “It’s strictly functional. But Connecticut added the IQ component, so it eliminates an individual who might have a significant functional disability because their IQ is one point higher than the cutoff.” While Bosch said Vista provides limited financial aid to some participants and also receives some funds from a private donor, the program can offer little else financially for a person who doesn’t qualify for DDS funding. Rich Rowlenson, whose daughter Mary is an “outreach” member who’s reached the most independent phase of the Vista program, also identified with the difficulties of providing for an adult with autism without government help. “It was extremely hard to find any opportunities for funding,” said Rowlenson. “Any information was hard to find, and even the (DDS) website wasn’t very good. It was so difficult we

had to talk to an attorney to understand what we could and couldn’t qualify for.” Once Rowlenson finally talked to DDS staff, he didn’t make it very far, he said, and was turned down for funding based on the IQ cutoff. Unintended Effect Bosch said the IQ component was established decades ago during a push to close down institutions for those with mental disabilities as a way to control access to limited state funding. Now, the standard may serve the opposite purpose, she said. Those who need funding most to live independently may not receive it. The lack of funding for adults services is widespread, said Shannon Knall, advocacy chair of Autism Speaks in Connecticut. “The DDS is in a horrific state of affairs right now. There’s no money,” Knall said. “The programs are severely underfunded and underrepresented, so these adults who have the potential to go to college are sitting at home with their parents or in a group home.

They’re not utilizing their skills and abilities.” Knall has a son with autism who won’t qualify for DDS aid because of the IQ component. “My son can live independently and be a productive member of society, but there’s not enough resources to make that happen,” she said. In 2006 the state launched its first program to provide services to adults with autism who do not have a mental retardation or have an IQ above 69. The program was very successful, but efforts to expand it to serve more people – and provide funding for some adults to attend Vista and similar programs – have stalled for lack of funding. And that has frustrated autism advocates. If their adult children can’t live on their own, parents are frightened about what will happen when they are no longer around to care for them. Knall described high-functioning adults as an “invisible population,” some of whom may end up wards of the state, unemployed, or on

welfare if adequate services aren’t provided. Knall said her son “will cost the state copious amounts of money because whatever comes with his life becomes their responsibility. That’s a terrifying thought on so many levels.” Durnin, who has been pushing for change at the state capitol since her son was first diagnosed with autism, acknowledged that autism services are just one area of need facing the state. But she and other parents say failing to provide such services now will only lead to greater costs in the future. Seeing how Mary Rowlenson and others succeed at Vista is evidence of how well these programs work, her father said. “It’s taught her life skills … and her ability to create friendships now has been tremendous,” he said. Ellen Durnin says the same of Jeff ’s progress. “I never thought he could do what he’s doing now,” said Durnin. “He participates in the community. He really has his own life.”

Rebecca.Radolf@UConn.edu

Friends of Autistic People dreams of farm community Group home experience spurs search for alternative By Chris Perez Staff Writer GREENWICH – Brita Darany’s 14-year mission to create a better housing option for adults with autism started with a suspicion and a phone call. Darany remembers calling Kendra Farn, then of “Good Morning America” in 1997 and telling her she believed her daughter Vanessa, then age 21, with what she called “profound autism,” was being mistreated at a group home in Stamford belonging to a Greenwich agency. She also explained she hoped to get a story on the news that adults with severe forms of autism need services and was planning to start a farm community to provide an alternative form of housing. As Darany recalls it, Farn told her and her husband, Tibor, who is the vicepresident of international sales at Trans-Lux Corp., that their story could not be presented on the show based solely on their account of what happened. Farn told her that the best

way to get her story out was to put her idea into action. So the Daranys planned a free lunch in the backyard of their Greenwich home and invited about 30 guests, all parents of children with autism. Then she attracted as much attention as possible, contacting the local radio station, WGCH, and the local newspaper, The Greenwich Times, which sent a reporter. With determination, persistence, and some influential supporters, Darany created Friends of Autistic People (FAP) as an advocacy and education organization. FAP’s goal is to create a farm academy for young adults with autism that enables independent living and provides life skills that might help them have a dignified life.

Courtesy of Greenwich Post Vanessa Darany (middle) and her parents, Brita and Tibor.

Dodd, former Rep. Christopher Shays and Greenwich First Selectman Peter Tesei. She has posed for photos with Deirdre Imus, wife of radio personality Don Imus’ at a FAP fundraising event, met former Mayor Rudy Giuliani, and wrote to Warren Buffett’s sister looking for support. The farm is still just an ambitious idea. FAP needs to raise at least $2 million in order to purchase land and create the farming village. Influential Friends She has assembled a board FAP found a farm it thinks of directors and an impressive would be ideal in rural advisory board with a host of Newtown. It is one location influential names, including that is currently being conU.S. Sen. Richard Blumen- sidered. Preliminary plans thal, former Sen. Christopher for the farm were drawn up

recently, and Darany has received an offer of help from a landscape designer. Darany turned to the idea of a farm community because she was unsatisfied with the way group homes in Connecticut are run. Staff at many group homes are not properly trained to handle the needs of people with autism, such as sensory sensitivities, she said, and the homes aren’t conducive to guiding individuals toward a life of dignity. They may tend to a person’s needs – doing virtually everything for them – but they don’t teach them how to live independently. Group homes in Connecticut are funded by the state

and provide people with intellectual disabilities a place to live. People with an IQ under 70 qualify for state services but not every person with autism has a low IQ, leaving them without a reliable housing option to provide care for them when nobody else can. Based on the experiences Darany says her family went through with Vanessa’s group home in Stamford, she feels obligated to get her message out. “I want people to know how adults with autism, profound autism, are treated in some group homes,” she said. Vanessa was housed in a group home in Stamford up until 1996 when Darany noticed bruises on her daughter’s thighs, she said. She believes they were the result of the staff’s frustration when they had trouble communicating with Vanessa and she threw tantrums. She also believes Vanessa suffered from depression because of the abuse, by the way she would lay in bed for hours and tear photographs off her wall. The home severely restricted the family from visiting Vanessa, Darany said, which is an illegal denial of parents’ rights. They eventually kicked Vanessa

out because of behavioral issues, she said.

Group Home Alternative With few places to turn and angry at how her daughter was treated at the Stamford group home, Darany began the journey toward creating her own housing option a few years ago. A farming community offers unique advantages because of the positive reaction some people with autism have shown to being in nature, Darany said. Residents will be able to grow crops in a greenhouse or on an open field, go for walks and ride horses. The Newtown farm FAP would like to buy already has a residence, and Darany wants to build three more, all of which will harness solar power. Each residence would house five young adults with autism and three staff members. The staff would include qualified college interns and special education teachers. The goal is to offer a range of therapies – behavioral, sensory, music, art and horticultural. The farm is being modeled after the Bittersweet Farm in Whitehouse, Ohio,

FAP, Page 7


April 2011

From Inside

State of the Spectrum, Page 7

Software helps at school, home, work Variety of jobs for

those with disabilities at CW Resources

FROM PEOPLE, Page 10 interaction with others. Parents have come to favor such technology, she said, because it is portable and less stigmatizing – their child doesn’t look any different from any other child who routinely uses a portable device. iPads loaded with applications designed for people on the autism spectrum are popping up in both public and private classrooms across Connecticut. Public schools in New Britain, Cheshire, Fairfield and Bridgeport have purchased HandHold Adaptive software and have made iPads a staple in special education classes, said Rob Tedesco, co-founder of the company. But not all students with autism need the most advanced technology to learn and can perform well with traditional picture binders, said Margie Stahl, education consultant for autism at the state Department of Education, Bureau of Special Education. In Connecticut, each school district’s special education program makes its own decision about what assistive technology to buy, she said. iPads are not a required in public special education classrooms, Stahl added, but it is becoming more common for parents to purchase iPads for their children than for public schools to buy them. Financial Help Available For those who cannot afford IPads and other hightech assistive devices, the Connecticut Tech Act Project, operated by the state

FROM MATCHING, Page 4 impressed with the attention her daughter gets. Kim barely speaks so it’s hard to know how she feels about CW, her mother said, but she seems happy.

Photos courtesy of HandHold Adaptive Evan Tedesco and his mother, Carey Tedesco, of Shelton benefit from using the portable visual aids on iPrompts because they provide clarity and structure.

Bureau of Rehabilitation Services, will provide technology assistance to people of all ages and disabilities, as well as family members, educators and employers. The program makes lowinterest loans available to buy assistive technology and services for individuals with a disability that affects a major life activity. Also, any Connecticut school or educator is eligible to borrow computers through the agency’s loan program for special education students with an array of learning disabilities. iPads, laptops, Macs, or PC tablets with various adaptive software installed are available on a first-come, first-served basis. Computers can be borrowed for up to four months. Information is available at www.cttechact. com or at (860) 424-4881. The use of iPads for peo-

ple with autism does not stop at the classroom and can help adults experience the same benefits. Tedesco says iPad apps designed for the autism community can assist teenagers transitioning into adulthood by helping them organize their responsibilities and provide reminders for duties at work and elsewhere. Helping Adults at Work For instance, Tedesco said one young woman uses iPrompts on her iPod Touch at her dry cleaning job to help her understand and manage workplace tasks with clarity and structure. “It’s so motivating (for them) to use iPads because we’re able to find out what they’re interested in that we otherwise may not have known,” Klebanoff said. “It provides them with independence.”

Klebanoff says iPad applications are the most dominate type of assistive technology available today because apps are considerably less expensive than other specialized computer software. Dr. Letitia Naigles, head of the developmental psychology department at the University of Connecticut, said iPads allow communication to flow more smoothly. People with autism often have fine motor skill difficulties, Naigles notes, and tapping and sliding on an iPad is often easier than clicking a computer mouse. “Ultimately, iPads will bridge those diagnosed with autism with the rest of the world,” said Naigles, “where using popular technological devices such as this one has become commonplace in our everyday lives.” Lindsey.Cunningham@UConn.edu

Employees receive unique training at Walgreens FROM WALGREENS’, Page 5 finding a date, though that may be because, as Wendover put it, “he’s looking for a girl who looks like Pamela Anderson.” “He’s super successful,” Wendover said. “It’s the social problem that’s really, really hard for him.” Bryan Handy works in receiving but on this day he is helping in detrash. He lives at home with his mother and does not drive himself to work. “If I compare Paul or Tim and then compare them with Bryan, they’re very different,” Wendover said. “Socially, (Bryan) will not sit down and have a conversation with you unless you ask him a question.” Walgreens is Handy’s first job, but he has been as successful as any other employee there, Wendover said. Unique Training People with disabilities who appear to be good candidates to work at Walgreens are usually recommended through schools or state agencies like the Bureau for Rehabilitative Services (BRS) or the Department of Developmental Services (DDS). Some fill out an application, get interviewed and go out on the floor right away. Others, typically individuals who have never had a job before, go through an 18-week training program, which Walgreens contracts Community Enterprises to run. The program is broken down into two nine-week phases. The first phase is unpaid and lasts five hours a day. In this phase, social skills, teamwork and eye contact are emphasized,

and Walgreens’ policies and OSHA techniques for lifting heavy objects are taught. Trainees also simulate working on various jobs, from opening cases and removing products to sorting products for shipping to retail stores. Applicants who successfully complete phase one move on to the “transitional work group” phase. Trainees are paid $10 an hour to work on the floor alongside full-time employees, where they gain experience and work to get their production and accuracy rates up to Walgreens’ standards. Program director Carla Gaouette estimates that nearly 99 percent of applicants who successfully complete both phases of training are offered jobs at the distribution center. The cost of training one person is $37 a day during the course of the 18week program, according to Gaouette. Community Enterprises receives half of the training program funding from the Walgreens Training Program Grant, provided by the Connecticut Bond Commission. The other half comes from several state agencies. The training grant will run out in December, at which point the distribution center is expected to be operating near full capacity. At that point the program will be training significantly fewer people and state agencies will pay the entire bill, she said. Since the program’s inception toward the end of 2008, 118 people have successfully completed the 18week training and received

jobs. All but five are still at Walgreens, she said. Workers on the autism spectrum make up a small percentage of the distribution center’s workforce. Gaouette says this is because the state agencies Walgreens relies on for referrals have requirements that disqualify many people with autism. “Depending on how you fall, you might not fit the need for supports,” she said. “They may not think you fit the need of getting DDS supports or getting supports from BRS or something like that, so its been a difficult thing for that particular population to be served.”

“Everybody’s different, everybody brings their own idiosyncrasies to everything.” Joe Wendover, Outreach Manager Gaouette believes those requirements will change in the wake of a DDS pilot program designed to help adults with autism be more independent. A Model for Others Walgreens’ unique hiring initiative is beginning to catch on in Connecticut. Other businesses including T.J.X., Lowe’s and J.C. Penney have contacted Wendover expressing interest in starting similar hiring

programs, and Walgreens is about to launch pilot programs in its retail stores in Windsor Locks, Enfield and elsewhere. Lois Rosenwald, executive director of the Connecticut Autism Spectrum Resource Center, says the Walgreens model has been beneficial to the autism community in Connecticut, but much more work needs to be done to solve the unemployment problem facing adults with autism. “Certainly it has given not only jobs to some, but great hope to the community,” she said. “But this is a huge spectrum disorder and we need a number of different models of employment.” Likewise, Shannon Knall, advocacy chair of the Connecticut chapter of Autism Speaks, is thrilled with the opportunity Walgreens has given adults with autism in Connecticut and hopes other businesses will follow the Walgreens model. “I hope it catches on because not everyone can work at the Walgreens distribution center,” she said. Wendover admits employing individuals with autism has its challenges, but says they are not all that different from the typical challenges of running a huge distribution center. “I think the challenge is that everybody’s different,” he said. “One strategy with one person isn’t going to work with another person. But then I think that’s also a challenge with people without autism. Everybody’s different, everybody brings their own idiosyncrasies to everything.”

Educating Employers Some employers are more knowledgeable than others about employing people with disabilities, especially autism, Lavoy said. Employers such as Walgreens embrace hiring employees with disabilities as part of their diversity initiatives and have allocated resources to train workers. Yet, the process of explaining the diversity of the spectrum to most employers is challenging, she said. “Many folks with autism are very bright individuals, very capable of doing many things, (but) have a difficult time with the communication or the social aspect,” she said. Some people with autism, like Kim, won’t or can’t talk. Others can hold entire conversations, like Greg Green, 22, who’s been in the supported work program since 2007. Green was diagnosed with autism in the fourth grade. Before his diagnosis, neither he nor his mother suspected he had autism. “As I got older I asked what was wrong with me. She told me I had a disability,” said Green. “Finding out, I got mad because she didn’t tell me. I didn’t know.” Green works with job coach Wanda Scott, who heads the CW’s school-towork program in Naugatuck that aids young adults transitioning from high school to a job. Scott said Green wouldn’t speak to her his whole first year in the program. Gradually, he began to open up. “He gained a lot of social skills. Finally one day he just started talking, asking for things and asking questions,” said Scott. “It took a while but I watched him grow… little by little he started talking to other staff. He has a relationship with everyone now,” said Scott. Variety of Jobs Clients are cycled through different jobs to determine their interests and abilities, said Lavoy. At different CW

worksites, Green delivered meals to the elderly, worked in animal shelters and returned deposit bottles. “I want people to know I have trouble understanding things sometimes,” said Green. “I can’t multi-task but I do one thing at a time and try not to stress about it. I want people to understand that living with a disability is not easy.” The goal of the community rehabilitation program is to provide vocational training and support to people with disabilities and to invite businesses outside of CW to take a serious look at hiring its clients, said Lavoy. “It is not an easy task. CW has been in business for 47 years and we have a lot of connections right here in New Britain and throughout the state but we continue to introduce ourselves by phone-calling, door-knocking to explain who we are,” said Lavoy. CW has service contracts in seven states, and employees in its product division package Maxwell House and Sandra Lee coffee. Among its newest contracts is lawn care and snow removal services for elderly and disabled residents in New Britain, a custodial contract at the Federal Records Building in Waltham, Mass., and a contract to manage the commissary in Fort Lee, Va. CW tracks its success with annual surveys in which job developers visit employers to ask about client performance and job openings, said Lavoy. “The highest form of praise is when they contact us, uninitiated, and say ‘We’ve got this opening. Do you have anybody for us?’” Lavoy said she wants to make sure employers understand that people with disabilities such as autism are often able to offer just as much as other workers. “They are willing to work really hard for that employer. They are going to come in day in, day out and be committed,” she said. “They just need the opportunity to shine and employers that will let that happen.” Valeria.Lacourciere@UConn.edu

FAP hopes to raise $2 M for farm FROM FRIENDS, Page 6

a little over 10 percent, or $250,000, Darany said. Fundraising can be a challenge, she said, because of a tight economy and competition from other organizations seeking donations. Although the state won’t help purchase the farm, Darany said, it has expressed interest in running programs there for young adults. Today, Vanessa lives in a different group home, one that the family trusts, Though it’s hard to predict when the farm idea might be realized, it hasn’t stopped Darany from trying to educate people about the needs of young adults with autism. “What are they going to do?” she asks. “They need to have a life.”

which is comprised of three campuses, each offering a different program and service. As part of the residents’ training, the farm provides educational and consulting services with the goal of increasing self-reliance, maximizing dignity and encouraging interaction. That’s the idea Darany presented to parents at the first fundraiser in her backyard, which was followed by a benefit dinner in Bell Haven, which raised $25,000 and attracted then-Attorney General Blumenthal and many Greenwich parents. Another dinner later that year raised another $35,000. FAP continues to hold a fundraiser each year. With $2 million as its goal, the organization has raised Christopher.Perez@UConn.edu Stephen.Hamel@UConn.edu


State of the Spectrum, Page 8

April 2011

Housing

Their dream: innovative housing for adults with autism A better life at college-style community By Chris Perez Staff Writer WEST HARTFORD – When Karen Lepak walked into a tattoo parlor on Martin Luther King Jr. Day two years ago, the 62-year-old grandmother was simply trying to scratch something off her “bucket list” by getting a tattoo of a dog paw on her ankle. But as she took off her jacket, the grandmother from Manchester noticed the pin she always wears on the breast pocket and was reminded of her grandson who has autism. From there, deciding what tattoo to get was a no-brainer. A puzzle piece. Lepak’s grandson, Ben Borre, is a 9-year-old with autism who is non-verbal and requires assistance in most of what he does, from letting his parents know what he wants to eat in the morning to learning how to play. Ben’s mother, Darlene Borre of West Hartford, was at first stunned to find

out about her own mother’s ink but was touched when she saw it. “She’s not a Harley kind of mom at all,” she said. “It’s so uncharacteristic for my mother to have a tattoo. It also speaks volumes about what she feels about my son.” After They’re Gone Both women fear what will happen to Ben when they can no longer take care of him. The answer to that fear, they hope, is their dream of a college-style community they call “All Season’s Academy.” Lepak and Borre are in the early stages of creating ASA to provide services to people with autism as they transition to adulthood. It would serve people across the autism spectrum, from individuals who need constant attention to those who can function at a higher level. The project’s main purpose is to provide hous-

ing for adults with autism. A “center of excellence” would provide on-site therapy – speech, physical, occupational, art and music – and sensory rooms, said Borre. A community center would provide residents and staff with a pool, whirlpool bath, indoor track, kitchen and a TV room. Though they haven’t decided on where to build the academy, they believe such a community will help alleviate some of the anxiety parents feel about what will happen when their child reaches adulthood.

CHRIS PEREZ/State of the Spectrum

Above, to the left: Karen Lepak’s tattoo, which she got to honor her grandson, Ben, 9, who has autism. Just above: (From left) Jennie Hiza, Ben’s babysitter, Ben, Darlene Borre, Lila Borre and Alex Borre.

They won’t start serious planning until they can tell potential donors where every dollar is going. It’s a long-range vision, and for now the two women are considering a broad range of ideas without worrying about the cost. They are studying housing reports, visiting group homes and researching models in other states, such as the New Eng-

land Village in Pembroke, Mass., which helped shape their vision. ASA has attracted many supporters during its short existence. “That place can’t be big enough,” said Shannon Knall, the Connecticut Chapter Advocacy Chair of Autism Speaks. “If that happens there will be a waiting list into Texas.” About 70 parents at-

tended an initial meeting in March 2010, filling out questionnaires that detailed their needs as well as their child’s. The feedback was very helpful, both women said, and soon the word about ASA spread and more people expressed interest and support. Last year, ASA was granted non-profit status.

PARENTAL, Page 9

Autism farmstead plan gets helping hands Housing study predicts growing need

Lives with ‘dignity and worth’ is their goal

By Chris Perez Staff Writer

By Alexander Villegas Staff Writer MANCHESTER – A little help from friends. That’s what has helped turn a small group of churchgoing parents into a non-profit organization that hopes to build a self-sustaining farm community where people with autism can live, interact and work together. The Creative Living Community of Connecticut (CLCC) started small in the Emanuel Lutheran Church in Manchester five years ago, but now has a vision of serving adults with autism from across northeastern Connecticut. The group’s “farmstead” community would include a working farm, as many as 25 houses, and a network of small farming businesses that members hope will be an important employer and educator in eastern Connecticut. The Creative Living Community is modeled on other working farms with a similar purpose. One of the earliest such communities was Bittersweet Farms in Whitehouse, Ohio, an 80-acre farm established in the mid-1970s that provides housing for 20 adults. Residents engage in activities that directly contribute to their community, such as building furniture, milking cows or tending to gardens. The farm also hosts day and summer programs so adults and adolescents with autism can be a part of the community even if they don’t live there. Bittersweet Farms grew from the efforts of Bettye Ruth Kay, a special education teacher concerned about the future of her students with autism. Kay studied ways adults with autism could live fulfilling and enjoyable lives. She found the answer in farming, which she discovered pro-

Suitable housing for adults with autism is considered a key element in planning for their future. What happens when they can no longer live with parents or families because of death or other circumstances? The difficulties of providing residential options for young adults with autism is growing, according to “Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders.”* This national report of a landmark collaborative study provides startling numbers:

vided “immediately meaningful” results and gave her students a positive affirmation of dignity and worth. Why not Connecticut? CLCC hopes to bring such a place to Connecticut. “There’s a working model in Ohio and one in New Hampshire,” said Cindy Hall, the vice-president of CLCC. “So why can’t we do it here, the wealthiest state in the nation.” Hall’s 23-year-old son, Curtis, has autism. After leaving the public school system at 21, Curtis is going through the difficult transition from school life to adulthood. Hall’s main concern is that her son isn’t going to be able to benefit from the activities he enjoyed in school. More than a paycheck “We didn’t want [Curtis] to be in a job that would just bring home a paycheck,” said Hall. “We wanted him to be happy and engaged in what he loved to do.” Curtis loves to draw. And with funding from the Connecticut Department of Disability Services (DDS), he is able to work at the Kerri Art Studio and Gallery in Willimantic twice a week. Curtis qualifies for funding from the DDS because of his low IQ, not his autism. Many adults with autism have normal or above-average IQ levels, making them ineligible for state assistance. Realizing this, Hall reached out to members of her congregation at the Emanuel Lutheran Church, some of whom began to volunteer their time and effort to get the organization going. One of the founding members and now chairman is Vyrjil Buus, a family friend of the Halls. Buus does not have a child with

jessica tommaselli/State of the Spectrum Curtis Hall, 23, who has autism, is the son of CLCC’s vice president, Cindy Hall. Curtis loves to draw and is featured on page 10 in the story ‘Gallery showcases work of artists with autism.’

autism, but he’s a veteran board member of various non-profits and has housing experience as current chairman of Luther Ridge, a subsidiary of Lutheran Social Services of New England, which provides housing for low-income seniors.

anti-poverty agency in Hartford and Middlesex Counties. With experience with low-income housing, Cévan put the CLCC in contact with government officials to discuss their plans. And she helped in other ways. “She helped us think about board development, housing needs assessments,” said Hall. “She really brought us to a different level.” In 2009, the organization won non-profit status with free legal help from the University of Connecticut Law School. A law professor took on the group’s non-profit application to give students some real-world experience and they helped CLCC navigate the often-complex process of becoming non-profit under state and federal tax law.

Common Dilemma As the CLCC grew, members realized that many of them faced the same problems – the lack of government services or housing for many adults with autism. After getting help from others in the congregation, CLCC members turned to the church itself. Their proposal to the Deaconess Community of the Evangelical Lutheran Church of America resulted in a $25,000 grant in 2006. They used the money, in part, to hire professional help, said Buus. Fast-Track Help That help came from “They did a fantastic job,” Maryanna Cévan, a consul- said Buus. “We received no tant who works for the Community Renewal Team, an NEXT, Page 9

have many of the difficulties of autism, such as problems with social interaction, communication and imagination, but many have high IQs. A variety of living and housing options already exist, including traditional group homes and a wide range of integrated alternative communities planned by non-profit groups. Among the options are: • “Supported living” for individuals who are capable of living independently with minimal assistance from a staff; they live in self-owned or leased homes in the community. • “Supervised living” with greater assistance from staff than a person in supported living needs; residents sometimes live with another person with an ASD, and crisis support is available 24-hours-a-day. • Group homes available for people who need a higher-level support and have intellectual disorders. The goal is to increase the level of independence in residents. • Farmstead programs that provide residential living on a working farm. These programs allow for vocational training, though it is limited to farm-related work. Because many farms are isolated from the community, there is often little community integration. Many group homes already exist in Connecticut, funded by the state. At the same time several ambitious non-profit organizations are attempting to create their own housing options in the form of small, integrated communities that also would provide needed services and training.

• In the 1980s, the number of ASD diagnoses in children was 1 in 10,000. • Today the number has increased to 1 in 110, according to the Centers for Disease Control. • Of the 1.5 million people who have been identified with ASD, approximately 80 percent, or 800,000 people, are under the age of 22. • A 2008 study by Easter Seals, a disability service provider based in Chicago, found that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home. The numbers suggest that large numbers of those diagnosed will need alternate housing options in the future and people in the Connecticut autism community say that those options will surely be lacking here. The government only provides services for those with intellectual disorders. That’s a problem for many people on the autism spectrum whose IQ is 70 or higher. Individuals with Asperger’s syndrome, for instance, Christopher.Perez@UConn.edu


April 2011

From Inside

State of the Spectrum, Page 9

Puzzlethon for autism

Making them fit The Autism Society of Connecticut, or ASCONN, held its fifth annual Puzzlethon fundraiser this spring throughout the state. People of all ages, parents and children, raised money by piecing together puzzles of all shapes and sizes. These photos illustrate the April 2, 2011 Puzzlethon at Southern Connecticut State University. Photos by Jessica Tommaselli

Parental guidance, input vital for All Seasons Academy FROM THEIR, Page 8 Like many ambitious projects just starting out, the plans for ASA remain fluid, but the goal doesn’t change – making life easier for families by assisting in the day-to-day challenges they experience. Family Challenges As parents of children with autism know, a living environment plays a crucial part in creating a stable life. Borre’s life at home has changed drastically since Ben was diagnosed. Ben will open any door he can, so every room in the house has a lock on it, along with the fridge and all the kitchen cabinets. A bathroom drain is being installed because Ben is infatuated with water but is unable to recognize that flooding the tub is a bad thing.

“Life isn’t going to be easier, it’s going to be better.” Darlene Borre, Parent and advocate

He needs almost continual supervision, either by assistants in his third-grade classroom at Whiting Lane Elementary School or an after-school babysitter with experience in autism training. Even scheduling planning meetings for ASA can be problematic because Ben always needs to be accounted for. He can’t just plop in front of a television and watch the newest episode of “SpongeBob Squarepants,” his mother said. Not being able to communicate what he wants makes Ben anxious, and his frustration can build to the point where he may throw a tantrum – something unusual for a 9-yearold, said Borre. Just as Ben’s needs are

unique to him, she says, every person with autism has individual needs. And family members often must adjust their lives to meet those needs. Borre believes the around-the-clock support and variety of services ASA would offer will help young adults cope with their anxiety and frustration. “Life isn’t going to be easier, it’s going to be better,” she said. A Growing Problem Increasing numbers of families are facing these issues. According to Opening Doors: A Discussion Of Residential Options For Adults Living With Autism and Related Disorders, 500,000 children already diagnosed with autism will become adults in the next 15 years, while 80 percent of people with autism are under 22-years-old. In Connecticut, no one knows just how many people have autism, so it’s impossible to know what level of services, including housing, will be needed in the years ahead. The state provides services to those with intellectual disabilities, but not every person with autism qualifies. In order to be granted housing and educational services, as well as job training and opportunities, a person must have an IQ of 70 or below, which disqualifies many people on the autism spectrum. People with Asperger’s syndrome, for example, can have very high IQs and not qualify for state services. Without a more suitable housing option, adults with autism often have to live with family members or in a group home. “As parents we can never die because there’s no one to take care of our kids,” said Knall, of Autism Speaks. Group Homes a Poor Option Borre and other housing advocates say group homes are not well-suited to people with autism because they are not set

Next step for CLCC: Finding a farm FROM AUTISM, Page 8

challenges from either the state or the IRS,” he said. “[The professor] told us there’s always a challenge. And if there’s a challenge you go to the bottom of a pile and it can take years. ” The group’s application was approved in February 2009. “We never would’ve been able to afford,” the application process, added Buus. “Legal fees are in the range of $200 an hour and I don’t know how many hours we spent with those students, or how many hours they spent on their own.” Students also benefitted from the experience, Buus added. “The professor said this project probably provided the most complicated experience for CHRIS PEREZ/State of the Spectrum these students that they’ve ever had.” The CLCC hopes to offer Ben Borre, 9, uses his iPad at home. Borre’s mother, Darlene, is an advocate for autism awareness and a founder of All Seasons Academy. similar real-world experience to other college stuup to handle the sensory holding quarterly meetings. dents once their farmstead sensitivities that often Getting the word out is im- community is built. “I think we’re in a accompany autism, and portant because they don’t staffs are not properly expect government funding perfect area because of trained to deal with the and will need to raise money UConn,” said Janette Peracchio, a CLCC board from private sources. challenges it presents. As ASA blossoms, Lep- member. “It’d be nice for What would make ASA different from a group home ak and Borre hope that students to come help out is the on-site input and su- businesses become eager in the farm as part of the pervision parents could to open on and around course work.” They hope provide to make the envi- the campus, creating the to work with students in ronment more suitable for possibility of employ- fields such as agriculture, their child. If they choose, ment for residents. They do harbor hope that older parents would be able to live in nearby housing as the number of young adults with autism increasset up for them. Having parental guidance es, the government’s inand input are important, volvement will as well. “As this huge deluge of both women said. “The parents are the experts in children become adults FROM GALLERY, Page 10 this disorder,” said Lepak. and starts to flood the sys“They live it everyday. They tems of every state, I re- ing their sessions, Lussier ally think the government tries to get him into the know their child.” Besides parents, ASA is going to change,” said rhythm of coming into would also be staffed by Borre. “I think the money the studio daily to paint. house managers, awake is going to come.” Lussier works on his own Though there is no cure paintings and encourages overnight staff, a crisis team, resident advocates, for autism, they believe a Hall to work on his. and college interns. The stable environment might “He’s an extremely organization hopes to be the best “medicine,” bright young man with team with a college to said Lepak. great drawing skills, ” “If the environment is said Lussier. help provide assistance and has contacted several right we can at least think Hall is currently drawof stabilization for most ing and painting a series in Connecticut. To increase awareness, ASA folks, (though) not for ev- of traffic signs. “He’s also has done radio interviews, erybody,” she said. “But it working on a CBS Evening launched a website (www. makes such a difference.” News piece,” said Lussier. allseasonsacademy.org) “He loves CBS.” and a Facebook page, and is Christopher.Perez@UConn.edu Lussier also gives Hall a

family studies, psychology, animal studies and social services. The group’s first priority is finding a suitable property. It’s looking for a 100-plus-acres farm where they can build between 15 and 25 houses, raise farm animals, and have a variety of micro businesses. CLCC has registered with Connecticut Farm Link, a website sponsored by the Connecticut Department of Agriculture that helps match farm owners and prospective buyers. So far they have information about four different farms in eastern Connecticut, said Hall. “Now we need to start that conversation with these farmers, to see if our vision matches their legacy,” she said. After finding a farm, they’ll need to finance the purchase and construction, which they estimate will cost up to $1 million. At they look ahead, they hope their luck attracting people to help will continue. “We’d love to find a movie star or some big time philanthropist that would absolutely love our project,” said Hall.

Alexander.Villegas@UConn.edu

Job coaches help artists grow

weekly art lesson, Lussier keeps the lessons short and Hall seems to learn quickly. Lately, they’ve been working on “color vibration.” “I’m just trying to help him grow as an artist as best I can,” said Lussier. Hall has two paintings on sale at the gallery and his parents hope he’ll have his own studio one day. “He goes there happy and he comes back happy,” his mother said. “And that makes us happy.”

Alexander.Villegas@UConn.edu


State of the Spectrum, Page 10

April 2011

Jobs/Technology

Gallery showcases work of artists with autism By Alexander Villegas Staff Writer

Photos by Jessica Tommaselli Clockwise, from direct left: Works of art, ranging from drawings and paintings to the mugs pictured, created by artists with autism are available at Kerri studio, located on Main Street (photo above). To the right, Kerri Quirk, 45, the namesake of Kerri studio, paints. Quirk, who has autism and is deaf, runs the studio with help of her job coach, Tom Menard. Below, Curtis Hall, 23, draws with chalk.

WILLIMANTIC— Even on rainy April days there are hints that “Spring’s Ahead” in Willimantic. In between the out-ofbusiness shops, dim-lit bars and small eateries on Main Street is a wooden door flanked by two pots of purple flowers. Bright paintings of flowers and frogs adorn the windows, and even more art depicting the spring to come hangs on white walls inside. Atop the door at 861 Main St., a small wooden sign reads Kerri Art Studio and Gallery, where artist Kerri Quirk, 45, is displaying her newest exhibit, “Spring’s Ahead.” An array of music, ranging from today’s top 20 hits to those of 50 years ago, greets visitors. Quirk, who has autism and is deaf, can often be found in the backroom working, undistracted by the music or events in the gallery. She communicates best through sign language and art and, aside from the occasional break, spends most of her time at the gallery painting. The studio is run with the help of her job coach, Tom Menard, an accomplished painter of folk art who likes to capture the “simplicity and beauty of small-town life” in his paintings.

Kerri studio brightens downtown Willimantic Menard started working with Quirk more than seven years ago through Horizons, a Connecticut based non-profit organization that helps people with developmental disabilities. Over the years, Menard has helped Quirk develop her style to create bright, vividly colored acrylic works of art. Her work has received a good deal of attention and has been featured in several art shows throughout the United States, including the Outsider Arts Fair in New York City. “She does quite well for herself,” said Menard, whose main contribution these days is helping to run the studio. “I’ve seen her progress so much. Menard says he has seen his work with Quirk im-

prove his own art, if for no other reason than Quirk’s sheer dedication. “She sits there and works all day, and that motivates me to work on my art,” said Menard. Quirk’s emergence as a successful artist has encouraged others with developmental disabilities. The gallery’s newest contributor is Curtis Hall. Hall, now 23, was diagnosed with autism at the age of three, when the incidence rate was still 1 in 10,000. After his diagnoses, the Halls were referred to an autism support group where they were told that everything they knew about raising a child was about to change. “We were scared,” said Hall’s mother Cindy. “We didn’t know what was going to happen.” It wasn’t until

he enrolled in schools with special education teachers that his parents finally felt that “things were going to be O.K.” In the Coventry public school system Hall began to socialize and became a part of the community, said his mother. After completing his high school curriculum and walking with his class in 2006 at graduation, Hall stayed in high school until age 21, when his legal right to free education ended. It was during that time that he started to draw and discovered his passion for art. “I always thought it was funny,” said Cindy Hall, “because Curt hated art class in middle school.” About that time he received vocational training and had a few different jobs. He tried working at a hardware store but was more preoccupied organizing loose nuts and bolts than attending to other duties, his mother said. He also worked with a clean-up crew in Central Connecticut University, but soon grew tired of that as well. So far, painting is the activity that has kept his interest, his mother said. Hall works at the gallery two days a week with David Lussier, his Horizonssponsored job coach. Dur-

JOB, Page 9

People with autism tap into technology For some, iPads, apps help in daily life By Lindsey Cunningham Staff Writer

When 6-year-old Evan Tedesco of Shelton, Conn., was diagnosed with autism at 19 months in 2006, his parents Dan and Carey scrambled to find the best assistive technology available for their son, who struggled with developmental and language disabilities. Like many individuals diagnosed with autism, Evan has a difficult time making choices, communicating his feelings to others, and moving from one physical environment to another. The early intervention team who worked with the family encouraged them to use pictures to assist Evan with the challenges in his daily life. The couple spent hours combing the Internet and other sources for photographs and other images, printing, cutting, laminating and inserting the images into a binder that quickly grew thick. The binder contained sequences of images that helped Evan complete daily tasks such as brushing his teeth by illustrating important steps before and during the task. The Tedescos were thrilled at how the binder helped Evan, but they grew frustrated at how it identified him to others as having a disability. They also wished there were more assistive resources on the market. One night in 2009, Evan’s

mother noticed the binder next to her iPhone and suddenly had an idea. She and her husband began brainstorming ways the iPhone could incorporate pictures to enhance the binder’s role. One idea was to put a digital timer next to a photo to better prepare Evan for an upcoming task or event. They also came up with a “choices” application, putting two options -- such as a hamburger or hot dog -- side-by-side to allow him to digitally pick a meal with a single touch. A Company is Born Soon after, they founded HandHold Adaptive, a Connecticut-based software company that has developed applications called iPrompts for caregivers of people with autism to use on handheld devices. Besides the “choices” and timer apps, there’s a scheduling app consisting of various pictures to ease anxieties while performing a task, an image library app which includes hundreds of photos from an array of categories, and one called “AutismTrack” that helps caregivers monitor a person’s behavioral and communication progress, along with their medications, supplements, dietary alterations or therapies. The apps

Photos courtesy of HandHold Adaptive

Above: Evan Tedesco, 6, uses an iPhone equipped with HandHold Adaptive’s iPrompts, a type of assistive software. The software provides visual cues to help those diagnosed with autism to focus easily and quickly. Below: The ‘Choice’ iPrompt helps nonverbal individuals with autism choose a preferred item.

are priced at $49.99 each. iPrompts are now used in several Connecticut schools and are just one example of the wide range of portable technology being embraced by schools and families of children with autism. In many places, enhanced software applications for iPads, iPhones, iPod Touches and Android Smartphones are gradually replacing the traditional assistive picture binders. Marcie Klebanoff, a certified assistive technology practitioner in New York, uses iPads daily with children on the autism spectrum in her private practice.

Klebanoff, who conducts seminars with parents and schools in Connecticut and New York on the benefits of using iPads for people with special needs, says many children with autism learn best with visual supports and strategies, and that iPads can accommodate applications that offer effective visual learning aids. said Klebanoff. “Visiting unfamiliar places isn’t as scary for them after seeing a sequence Making it Familiar “There are iPad applica- of pictures and or videos extions available that show indi- plaining what to expect.” Klebanoff said every child viduals with autism what they need to do each day, which with autism she has worked helps keep them organized,” with has been able to use the

iPad because of its touchscreen and overall userfriendliness. iPads are intuitive to use, enhance motivation and can greatly improve an individual’s social skills and

SOFTWARE, Page 9


State of the Spectrum