For people with intellectual and developmental disabilities S PR I N G 20 13
People with Autism Thriving Thanks to The Arc Although many people are aware that The Arc Baltimore is the nation’s single largest provider of advocacy, services and supports for people who have intellectual and developmental disabilities, fewer know that the agency provides those things for individuals with autism. As the following profiles reveal, people with autism are having great success at work and in the community thanks to The Arc. Working hard, playing hard
or many, many years, Tony Ciampaglia wanted to be the mascot for the Special olympics Maryland polar Bear plunge annual fundraiser. Sylvester “Sly” Bieler, director of day services for the arc, made it happen a few months ago. “the best thing about being the mascot,” jokes tony, “is being chased around like i’m Justin Bieber!” Joking is second nature to tony, who, in addition to having a dry sense of humor, just happens to have a heart of gold. in addition to donning his costume to hand out polar Bear plunge flyers throughout the community, he also made the plunge himself in January. He is a member of Ravens Roost #50, which raises funds for several non-profits. He is an usher at his church, volunteers at the Knights of Columbus and reads to people who attend the arc’s Homeland Center. “i help out wherever i can,” tony says. according to Bieler, tony has been receiving supports from the arc for eight years. He works at uniFirst with the help of a one-on-one job coach. He is responsible for sorting shop rags, towels and aprons according to their color and condition, then bagging them and putting them in bins. “i love my job,” tony says. “i love to do mechanic’s towels and bar towels. i know where everything goes so i can put things away.” Co nt in ued o n pag e 3
Tony Ciampaglia proudly displays his favorite part of the polar bear mascot suit.
KEEP IN TOUCH! it’s a breeze to stay up-to-date with the arc Baltimore via social media and our recently revamped website, www.thearcbaltimore.org. Like us on Facebook: www.facebook.com/thearcofbaltimore Follow us on twitter: www.twitter.com/thearcbaltimore View our pictures on Flickr: www.flickr.com/photos/thearcbaltimore Watch our videos on Youtube: www.youtube.com/arcbaltimore Connect with us on Linkedin: www.linkedin.com/company/the-arc-baltimore
Films Sprouted Up!
n March 3, 300 people attended the Sprout Film Festival, presented by the arc Baltimore and towson university’s Hussman Center for adults with autism. the festival highlighted films created by and starring people with intellectual and developmental disabilities such as autism and cerebral palsy. it featured two, two-hour sessions that included films from the united States, australia, France, the united Kingdom and Belgium. they ranged in length from two to 20 minutes. discussion sessions followed the screenings. a raffle was held with memorabilia autographed by John Waters and actors from the show “the Wire.” the items were donated by pat Moran and associates and Blown deadline productions. in addition, a package of films from the festival was donated by Sprout.
Arc board member Crystal Stephens puts on the glitz.
She’s got the red carpet spirit!
Founded in 2003, the Sprout Film Festival brings innovative and inspiring programming to people with developmental disabilities. it is planned and supported by Sprout, a new York City-based non-profit that partnered with the arc u.S. thank you to towson university’s Mass Communications & Communications Studies, electronic Media & Film, and disability Support Services for additional assistance. ●
Film buffs from The Arc
Libby Bryant (left) and Makea King worked the raffle table. Family time at the Sprout Film Festival
Arc staff members and significant others turned out for the festival.
Towson University Associate Dean Greg Faller and his wife, Rita
Scan this code to link to the film “One Question.”
People with Autism Thriving Thanks to The Arc Co n tin u e d F Ro M page 1
terri Spurrier, coordinator of community employment, says tony has found a home at unifirst. “the floor supervisors at uniFirst are engaging and frequently ask tony for help,” she adds. “He is continuously learning new skills and his goal is to stay at uniFirst and learn to operate the equipment there.” that makes sense, given that tony knows a lot about cars. “tony will get in my car and if he hears a clink or a clank, he’ll tell me what’s wrong. or he may observe that my tires look bad. then he’ll tell me where to buy new ones and suggest that i use his name so i can get a discount,” says Spurrier. that kindness is part and parcel of who tony is, Spurrier adds. “He’ll ask about you and what you’re interested in. He is an incredibly thoughtful person. He used to work at united Cerebral palsy of Central Maryland, and he has a real soft spot for people who have significant challenges.” Sly Bieler attributes tony’s success at the arc to the agency’s knack for providing enough individual day supports—but not too many. and he believes that listening to what is important in tony’s life and letting him direct where things go is significant, too. “tony does best when he does things according to a schedule he develops.” Chedva Vim
tony says he’s successful because the supports the arc provides enable him to keep his job. He says the agency also helps when he has “emotional meltdowns.” it’s hard to imagine that he has time for those, considering how busy he is.
“Chedva has grown in her socialization and life skills, and she is better integrated in to the community,” Vim says. “She is just much happier.”
“i hang out with friends from St. elizabeth’s. We have an alumni group. i play video games and i read books by James patterson, Clive Cussler and ingrid Lee. i also visit my grandmother in Minnesota every summer, so i’m a fan of the university of Minnesota golden gophers basketball team. and i love my cat, Fiona, named for the princess from Shrek.”
Vim is happier, too. “i wish i had known about the arc 10 years ago. i wouldn’t have had to bang my head against the wall every time i needed something. the arc make things very easy, and the people there make me feel as though it is a pleasure providing services to us. everything they do goes far beyond an expression of caring.”
Gratitude beyond measure
t’s hard to tell who is happier with the arc Baltimore: Rochel Vim or her 20-year-old daughter Chedva, a student at St. elizabeth’s school. Chedva receives 10 hours of respite care a week. “the arc helps find respite workers who are so wonderful,” Vim says. “they care about Chedva and treat her with respect and intelligence. the arc’s caseworker talks to Chedva and remembers what she likes.” one-on-one time with respite care workers is something Chedva very much looks forward to. She loves to go shopping with them and she enjoys when they take her to the Jewish Community Center so she can swim or socialize. She also likes eating out and going to respite care workers’ homes to cook and do crafts. Chedva’s mom says she has seen a lot of progress in her daughter since the family began receiving supports from the arc around three years ago.
“i don’t have enough words to express how wonderful the arc is—or how the staff always makes things work. as an example, Chedva is on a strong medication which makes it imperative that she not get overheated. Her doctor recommended that we get a generator in case we lost power again during the summer, and there was no way we could afford that. i spoke to ori [natividad, special projects coordinator], and the arc found the resources to pay for it. When i went to pick up the generator at Home depot, there was a little problem, and ori stayed on the phone with me as if she had all the time in the world, even though it was a Friday afternoon and she probably wanted to go home for the weekend.
April is Autism Awareness Month
“another thing i remember is the time a request couldn’t be carried out, and our caseworker told me, ‘i was up all night worrying about how to tell you.’ i thought that was so lovely.” Vim explains that predictability is crucial to maintaining Chedva’s emotional equilibrium. “the arc provides such decent, predictable Co nt in ued o n Fo LLoWi ng pag e
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respite care, and Chedva’s mood has been much more stable as a result.”
Richard Walen enjoys using his iPad.
in addition to providing Vim with peace of mind, it has given her a measure of confidence she may not have had with another agency. “i’m feeling a lot of anxiety anticipating Chedva’s transitioning from St. elizabeth’s school, but i know the arc will help us find the best place for her.” ●●●
Laughter is the best medicine
ichard Walen has been receiving community living and job supports from the arc for six years. asked how it feels to be autistic, Richard replies, “painful.” But he also tells you, “the arc brings laughter into my life.” anyone who has had a good laugh knows how it can change the tenor of a difficult day. Richard works at unifirst and receives guidance from his job coach, darryl Johnson. “darryl picks me up in the morning and i catch the bus back home. He says i’m doing much better with time management and being ready for work.” Joan Walen, Richard’s mother, says darryl has the expert skills needed to help Richard cope with and manage his autistic tendencies. “Having the same job coach for six years speaks well of the important continuity the arc provides for Richard.”
Find valuable resources at www.autismnow.org
he arc has established a national initiative, autism noW: the national autism Resource and information Center. it is a dynamic and interactive central point for quality resources and information for individuals with autism spectrum disorders and their families. the website focuses on core areas across the lifespan, including early detection, early intervention and early education; transitioning from high school; employment; community inclusion; and aging. You name it and the website offers encyclopedic information on it: civil rights, benefits, health, housing, public policy, recreation, relationships, research, safety, self-advocacy, sibling and family support, technology and transportation…and more. additionally, the following can be found at www.autismnow.org: ◗ instructions for accessing the call center to receive information, referral and support ◗ Webinars and a webinar archive ◗ an e-newsletter ◗ a local agency directory ◗ national, state and local networking opportunities
Remember to check it out!
autism NOW The National Autism Resource & Information Center
Visit these websites for other valuable autism resources: www.towsoniwb.com/centers/hussman-center-adults-autism www.pathfindersforautism.org/
For the past 11 years, Richard’s home has been an apartment in towson. arc staff has offered Richard guidance in following time management systems, weekly meal planning, grocery shopping and other household responsibilities. time management certainly comes in handy considering how busy Richard is. He meets friends for dinner on Fridays, belongs to social groups like the group for independent Living and has participated in activities and classes at the Hussman Center for adults with autism at towson university. Richard enjoys music and theater; he has been a Sunday volunteer at Center Stage for three years. Richard writes stories, and his book, “golden Stories,” was included in the 2010 Baltimore Book Festival and showcased at art in the Round. Richard says he plans to build on his working knowledge of technology, be it via computer, Smartphone or ipad. denise diCarlo, program manager for the arc, believes Richard is more secure than when she first met him. “Richard seems to want to do things on his own. He is much more social and seems to have come out of his shell quite a bit. Richard enjoys texting as well as calling when he wants to talk.” Richard’s mother has seen progress too. “the arc’s support has helped Richard towards becoming a more effective and successful adult who can adapt to the challenges of living independently. While the mantra for the arc is self-determination, adults with autism depend on arc staff to guide them beyond their comfort zones in order to experience new activities and gain new skills. the arc’s support staff has helped Richard increase his self-confidence and meet with success when risking new encounters.” When asking Mrs. Walen what her hopes are for Richard, she replied, “Richard has fulfilled my hopes. He is a remarkable person who i admire for his bravery, his kindness and his intelligence.” ●
Janitorial Crew and Port Discovery Staff are a Match Made in Heaven
or almost two years, a five-member janitorial crew and a job coach have been working at port discovery Children’s Museum weekdays from 8 a.m. until 1 p.m. they help set up and maintain exhibits, vacuum, dust and keep the exhibit space clean.
according to allis Kensing, the arc’s director of supported employment, crew members like having individualized tasks and feel good about having keys to doors and supply closets. She calls the crew a well-oiled machine and says workers never need to be reminded about what they need to do. Last fall, crew members even began to pick up additional duties—and make extra money—on weekends when the museum is rented out for special events. equally important, port discovery is delighted to have the arc workers at the museum. Kensing says, “the museum’s managers treat our workers just like they do the rest of the port discovery staff. We’re really part of the family.” Job coach Lori Ringgold concurs. “the port discovery staff enjoys having us, and our crew has built a rapport with them. Museum workers often ask whether our contract will be renewed, and they tell us they hope it will be. if someone is absent, a staff member always asks if they’re okay. We’re included in staff meetings and even the Ceo talks to our workers. it may be a quick question or comment, but it is so nice that the effort is made.”
Sarah McNeal makes sure the Wizard of Oz exhibit is spotless.
Magan Ruthke, director of guest services for the museum, is as enthusiastic about the arc as the agency is about port discovery. “We love having the arc here. it’s not just a help to the museum, it is wonderful for the public and our staff to be able to engage with the workers and develop a comfort level in those interactions.” Ruthke raves about how kind the crew is. “Before Boy Scout and girl Scout overnight stays, we get large orders of food and drinks. they are delivered on Friday mornings when we are very busy. if i’m the one to put the items away, i always try to do it as fast as possible so i can get back to the floor. a number of times, arc crew members have just jumped in, forming an assembly line to pass cases to me, even though the unpacking often happens during their break. i don’t ask for their help, but they insist. “i look forward to those times. We get to chat, and i learn about how their day is going or what’s happening in their lives. they’re great.” ●
Paul Beightol mops the floor of the Broadway Diner exhibit.
Michael Kent-Payton sweeps the floor with a smile.
A Great Turnout for Developmental Disabilities Day
renching downpours didn’t deter citizens with intellectual and developmental disabilities from joining their families, providers and other advocates in annapolis on February 19 to rally and meet with legislators about critical disability issues. everyone enjoyed a free continental breakfast, then listened to a legislative briefing before proceeding from Loew’s Hotel to Lawyer’s Mall for the rally. Midday, constituents who had made appointments with their legislators were able to meet with them. the event was sponsored by the developmental disabilities Coalition, which includes the arc Maryland, Maryland developmental disabilities Council, Maryland association of Community Services, Maryland disability Law Center and people on the go of Maryland.●
FY14 Budget Introduced the total dda budget is proposed to increase from $850 million in FY 13 to $909 million in FY 14, which includes new funds to serve an additional 850 people the following is an overview of the dda budget as first presented: ◗ a 2.5% rate increase for dd supports and services, which amounts to the inflationary increase mandated by SB 633 ◗ $9.5 million for “a full range of ongoing services for additional individuals at high risk,” the second of three planned installments to restore the unspent funds discovered last year ◗ $9.3 million to fund 608 transitioning youth ◗ $1.5 million to serve 40 additional people through the Waiting List equity Fund ◗ $2.3 million to serve 50 additional people in emergency placements ◗ $1.1 million to serve an additional 25 people who are involved in the court system
Thank you! Thank You, Renewing Members and Contributors! October 1, 2012 to January 31, 2013
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Project SEARCH Expands to MedStar Union Memorial Hospital
nspired by the success of the two project SeaRCH programs on the university of Maryland Campus, the arc Baltimore added a third project SeaRCH program at MedStar union Memorial Hospital last fall. this program, one of the first adult models in the country, is for individuals supported by the arc Baltimore. the Community College of Baltimore and the division of Rehabilitation Services are partners in project SeaRCH. each weekday, 11 interns begin their day in the classroom, where an instructor from the Community College of Baltimore County teaches them about employability and independent living skills. they spend the balance of their day in unpaid internships of their choice, supported by two on-site job coaches. each internship lasts 10 weeks and is designed to help participants gain marketable skills that will empower them to be competitive job applicants in the health care industry or elsewhere in the community. areas in which internships are offered include: radiology, the Curtis national Hand Center, patient transportation, linens, shipping and receiving, central stores, environmental services, operating rooms, the emergency department, dietary, admitting and discharge, the cardiac catheterization lab, health information systems, sterile processing, clinical services/audio-visual, pharmacy and infection control.
George Meekins readies the CT machine.
project SeaRCH interns may, for example, prepare hot packs for a patient in the Curtis Hand Center or copy radiology films to Cds. they may help transport patients, scan patient files, sterilize equipment and prepare surgical trays, receive packages, deliver linen carts throughout the hospital or set up multi-media systems for instructional presentations. according to ann Marie angarita, program coordinator, participants are thrilled with the program. as an example, she cites a gentleman who is currently interning in clinical services/audio-visual. “He is so happy he can barely contain himself.” as he puts it, “i like that people recognize my talent.” He is putting his knack for technology to great use and has been so successful that he was invited to stay on for an additional 10 weeks. His mentor believes he is highly employable.
Amanda Cook enters patient information in the admitting and discharge department. ann Marie shares comments from other interns: “project SeaRCH is wonderful because we get to do all types of jobs.” “project SeaRCH has changed me. i have had new experiences at work and in the classroom.” “i love my job.” one intern has already been hired to assist with patient transportation. ann Marie says MedStar union Memorial Hospital staff has been very welcoming and seem genuinely excited about the program. “they go out of their way to include us in hospital activities and treat us like part of the family. the hospital also provided us with a wonderful classroom and an adjoining office. that is a pretty big deal because space is at a premium.” ●
Pioneers of Project SEARCH at MedStar Union Memorial Hospital
Upcoming Family Events
If you or someone you know is interested in becoming an intern, or if you are in need of a capable, motivated employee, contact Ann Marie Angarita at 410-261-8386.
TUESDAY, MAY 28 Assistive Technology Fair
TUESDAY, APRIL 23 Sexuality and Relationships For People with Disabilities amber eienmann of planned parenthood will talk about sexuality and relationships for people with disabilities. a panel of people with disabilities will talk about their successful romantic relationships. The workshop will be held from 6-9 p.m. at The Arc Baltimore Employment Center, 6151 Metro Drive, Baltimore, MD 21215. A light dinner and child care (pre-registration required) will be provided. RSVP to Becky Hartnett at 410-296-2272, ext. 5309 (Fax: 443-279-3422) or by email at email@example.com
Vendors of simple to complex devices as well as services that enhance life and increase independence for people with disabilities will be on hand. Information will be posted on The Arc website. SUMMER (date TBA) Family Networking Picnic enjoy a picnic supper and fun for the kids in an informal setting. Family and caregivers will be able to meet new friends and share information about resources. don’t miss this popular annual event! Information will be sent to families and posted on The Arc website.
Community Meeting Gets Rave Reviews
n February 5, the arc Baltimore held a general membership update that was enthusiastically received. Staff gave updates on the arc’s programs, talked about the impact of healthcare and Medicaid reforms and gave a preview of the 2013 Maryland legislative session. one special feature of the evening was an information fair about the arc Baltimore’s programs and services. participants were able to have one-on-one time with key arc staff. those in attendance also had the opportunity to meet phyllis Landry, the newly appointment director of the Central Maryland Regional office of the developmental disabilities administration. they also heard from several community partners:
◗ Kathy Vecchioni, MSW, executive director of By Their Side, which works with Marylanders who have developmental disabilities and their families and helps them advocate for health, safety, happiness and personal rights issues. www.bytheirside.org ◗ Mary Anne Kane Breschi, executive director of Maggie’s Light, which provides funding for respite, camp and recreational services. in addition, it helps families identify college and graduate student caregivers and navigate local and statewide resources to obtain needed services. www.maggieslight.org ◗ Denise W. Fike, executive director of First Maryland Disability Trust, Inc. (FMdt), a nonprofit serving Marylanders with special needs. it offers a pooled asset special needs trust. FMdt provides cost-effective trustee and investment management services. www.firstmdtrust.org ●
Donate to Your Favorite Program Your tax-deductible contributions make it possible for the arc Baltimore to carry out our mission of providing advocacy and high quality, life-changing supports to adults and children with intellectual and developmental disabilities and their families. You can make a one-time gift or, if you prefer, a monthly gift through our Circle of giving Society. You can even make your gift more personal by directing your donation to one of the programs highlighted online at www.thearcbaltimore.org/donate.
Your support is vital. Please contribute today!
Advocate Advocate is published by the arc Baltimore, inc. 7215 York Road Baltimore, Md 21212 410-296-2272 www.thearcbaltimore.org firstname.lastname@example.org Feedback Line: dial option #8 or ask the operator for assistance Maryland Relay 800-735-2258 410-583-0060 (voice) James a. List, President Stephen H. Morgan, Executive Director Kate Mcguire, Chief Advancement Officer Christopher Knoerlein, Editor/ Director of Communications & Grants Steam Communications, Writing and Graphic Design
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Published on Mar 30, 2013
The Arc Baltimore's Spring 2013 Advocate newsletter features articles on people supported with autism, our Sprout Film Festival and our jani...