Livin’ Summer 2008 May – August 2008 Director’s Note By Amy Beck Is Disability Contagious? I recently had a moving conversation with one of our consumers; I’ll call him Leo. Leo is a proud man, who worked 25 years as an over the road truck driver. Because of a disability, Leo had to give up his career. He relies on a motor wheelchair or crutches for his mobility. He keeps a positive attitude and does what he has got to do to be fully involved in living his life. I can’t stop thinking about a story he told me. One day he had been traveling through a local park in his motor wheelchair. Everyone loves to go to the park on a beautiful day, right? As Leo drove through the park, his chair suddenly became slightly lodged in a crevice in the pathway. He did everything he could do on his own, but he was stuck. He needed another person to give a shove on the chair. With dozens of people in the park, he’d be free in a minute. Or so he thought. Leo waited and waited for help, but not because no one came by, it was because no one would stop to help! Plenty of people walked by, but person after person walked by ignoring his plea for help. What was in the thoughts of those who passed him by? Did they think he was a criminal who would jump them? Were they scared of liability? Were they just mean? I mean really, is it possible not one of the people who left Leo stranded had a cell phone? Surely someone could have called the police or fire department if they could not or would not lend a hand. Were passersby afraid of catching Leo’s disability? Did they pass by Leo to just jump in their comfy cars and buzz over to a trendy coffee shop, buy a $4 coffee and a muffin? Did they ever wonder what became of the stranded man in the park? Leo shared that he doesn’t know what is wrong with people. When he drove truck all those years, he often stopped to help others with flat tires, breakdowns, and he even gave rides to hitchhikers. (He admits it was risky, but it was what he did.) It was the unwritten code of the road; people helped each other out. When I was about 20 and stomping around college, I would use a cane to help me keep my balance when walking in snow and ice. I always took the most well traveled path in the snow and ice, to gain better footing. On one very icy/snowy day, I decided to walk out onto the township road to get to my classroom building. I clutched my cane and took small concise steps. Of course you know I am telling you my experience because I went down, in the middle of the street. Like a tire spinning on ice, I could not get traction to stand up. And, yes, cars began passing me by, and splashing me. I would like to publicly thank the older gentleman in the old turquoise Chevy, who took the chance and stopped to give me a hand. Let me set the record straight, you cannot catch a disability by being near, helping, shaking the hand of, or getting to know a person with a disability. I have often gone to shake another’s hand only to be given a weak, two fingered, quasi-shake. Any why is that? Are others afraid to catch my muscle disease, hurt me, get too close, or get involved? Be brave; get up close to and get to know people with disabilities. The only thing you’ve got to lose is your hang-ups about those of us with disabilities. Amy C. Beck LVCIL Executive Director Upcoming Events VOLUNTEERS NEEDED! The Lehigh Valley Center for Independent Living is always interested in finding new volunteers to help out around the office. If you are interested in clerical work, filing, copying, answering phones, folding or labeling newsletters, or helping out with LVCIL events - we are interested in you! Please contact Brenda Palmer at (610) 770-9781 ext. 15 for more information! PASILC YOUTH LED YOUTH LEADERSHIP CAMP ON November 7, 8, & 9, 2008 at the Pittsburgh Hilton PA Statewide Independent Living Council will hold a youth leadership camp, led by youth! For more information please contact Amy Selders at (717) 364-1732. ADA TELECONFERENCES Join us at the CIL for presentations by the ADA and IT Center from 2-3 p.m. and learn more about regulations and trends concerning the ADA. Upcoming topics include: June 17, 2008 – Accommodating Employees with Psychiatric Disabilities in the Workplace July 15, 2008 - ADA Update, 18 Years Later August 19, 2008 - Serving Customers with Disabilities - Implications for the Hospitality Industry THANK YOU, RYAN! LVCIL has been the fortunate recipient of some hard work from a local Eagle Scout candidate. Ryan Mair, a Parkland High School junior and member of Boy Scout Troop #72, approached LVCIL months ago, in hopes of making some improvements in our building as his Eagle Scout Project. Work is nearly complete on a total renovation of our Library, and improvements to our conference room. Accessible built-in work areas, new shelving and fresh paint are part of the work. All of us at LVCIL want to send a Big Thank You to Ryan and his excellent work crew! We welcome our LIVIN’ readers to stop by and see the great improvements in our building. THANK YOU TO KUTZTOWN UNIVERSITY DESIGN-A-THON STUDENTS This past April, the students at Kutztown University once again paired with non-profit agencies to produce design projects in 24-hours. LVCIL was graciously picked for its second year with the program. This years project for the students was to create a display board which can stand on tables at trade shows and community events. The kids worked tirelessly and created a great display that illustrates the programs of services of LVCIL. We hope to debut the full-size display board at this year’s Independent Living Celebration in July. ALTERNATE VERSIONS OF LIVIN’ Livin’ is available two alternate formats. If you would be interested in receiving a text-only version of the newsletter or a PDF version, please contact Bob Amelio at bamelio@lvcil.org. Formats are also available on the website. Freewheelers Events Basketball Practice at the Bethlehem YMCA Practices are Thursdays 7:45 to 9:10 p.m. Bethlehem YMCA, Broad St. Bethlehem, PA. Games held at Eastside Youth Center, Allentown. Bowling on a Saturday Afternoon Two times a month on Saturdays. Call for dates or watch website for more information. Tennis Practice at Lehigh University Wednesdays from 12-2:00 p.m. at Lehigh University’s Lewis Tennis Center. Call Bob for info. Lehigh Valley Tennis Classic A Nationally Sanctioned wheelchair tennis tournament will be held June 27-29, 2008 at Lehigh University. Upcoming Basket Bingo Basket Bingo will happen on July 19 and October 11, 2008. For more information, please call Bob. Monthly membership meetings: First Thursday of the month at Bennigan’s in Bethlehem, PA. All are welcome to attend and play whether you have a disability or not. Call Bob Amelio for more info or directions to any of our events at 610-770-9781 ext. 11 Enjoying Your Community By Corrina M. Passaro Summer is fast approaching and with warmer weather it is in excellent opportunity to get out and enjoy your community! The Lehigh Valley offers various recreational opportunities – many of which, are accessible to persons with disabilities. Three of the largest attractions in the Lehigh Valley are Dorney Park & Wildwater Kingdom, the Lehigh Valley Zoo and Coca-Cola Park. Dorney Park, which is located in Allentown, is an amusement and water park. The park is open 7-days a week in summer and offers more than just rides. There are carnival games, arts & crafts and live shows. On their website (www.dorneypark.com) there is a free, downloadable guide for persons with disabilities which explains accessibility of the rides, shows and other attractions, where to find alternate materials such as Braille park maps, and a list of rides that service animals can ride. It is also worth noting that the guide states that park employees are not responsible for transferring guests who use wheelchairs. If you cannot download a copy of the guide, you can receive one by calling Dorney Park & Wildwater Kingdom at (610) 395-3724. The Lehigh Valley Zoo, formerly the Trexler Game Preserve is located in Schnecksville. There are a variety of animals to see including camels, prairie dogs and otters. The Lehigh Valley Zoo hosts special events throughout the year, all of which are listed on their website, www.lvzoo.org. Whether or not you are a baseball fan, you just may enjoy a night out at the ballpark. Coca-Cola Park to be exact. Coca-Cola Park is the brand new state-of-the-art stadium and home of the Lehigh Valley IronPigs, a minor league baseball team affiliated with the Philadelphia Phillies. According to the IronPigs website, www.ironpigsbaseball.com the new stadium “…was designed to be universally accessible and comfortable for all fans with disabilities.” In addition, the stadium “meets or exceeds all ADA (Americans with Disabilities Act) specifications.” Plus, there are many features of the stadium that make it a very unique experience. Between fireworks displays, between-inning entertainment, giveaways, fun contests, great food and friendly staff, a night at the ballpark can be a fun and inexpensive way to spend an evening right here in the Lehigh Valley. But the Lehigh Valley offers much more to its residents. Did you know that Allentown has over 20 parks, Bethlehem has 8 and Easton has almost 30? Allentown recently launched a new initiative to get people active in their communities. At local businesses and nonprofits (including LVCIL) you can pick up the “Allentown Adventure Guide.” The guide is an excellent resource for all the outdoor activities that take place in Allentown over the summer. There is a map listing all of the parks in Allentown and the activities that take place at each. Did you know that movies are shown in Allentown parks? On August 1, at dusk in Irving Park Allentown will be showing the movie “Evan Almighty.” How about that in West Park there are band concerts on the weekends? Bethlehem and Easton residents are not excluded from the fun. Bethlehem offers many different events such as Jazz in the Courtyard at the Sun Inn, and other activities in the downtown area. In Easton, community members can rent gardening space and plant flowers and vegetables. The city’s website also lists all the city’s parks and includes which ones are accessible. During the summer Easton has many weekend events celebrating different types of heritage including African Americans and the Lebanese. There are many recreational options for persons with disabilities living in the Lehigh Valley. For information on what is happening in a specific city, visit the city’s website (all are listed at the end of this article) or check the local newspaper or news outlets. This is your community – get out and enjoy it! For information what’s happening in your community, check out your city’s website: Allentown – www.allentownpa.gov Bethlehem – www.bethlehem-pa.gov Easton – www.easton-pa.com Aftermath of the Primary by Joe Krycia My voting in the PA Primary story is nothing compared to the horror stories that I’ve read in the weeks following the primary. Voting went well for me despite the one step at the entrance of the polling place and the poll worker who stared at my wheelchair while saying “You’ve voted like that before, right?” I vote at a fire department building. Let’s face it, they probably don’t get too many firemen in wheelchairs so naturally the building, or at least the entrance they use for voting, isn’t wheelchair accessible. Since there were no poll workers stationed at the door, I had to approach other voters on their way in and ask them to alert someone inside that I was outside waiting to get in. After a few minutes, a door opened from the side of the building and I was let in through the fire truck and ambulance garage bay. This would be perfectly acceptable to me if I could have gotten in myself without the aid of passers by. So in the wake of the primary, I encourage you to share your stories with your county’s Director of Elections and Registration. We have a few months before the general election. Don’t hesitate to make some noise so that when it’s time to choose your president, you are able to exercise your right to vote just like everyone else. Keep in mind that accessibility is not limited to access to the building. You have the right to vote privately without the aid of a poll worker and polling machines should be accessible to people with ALL types of disabilities. The Lehigh Valley Center for Independent Living can be a resource for those polling sites that need to make accommodations. Also, on the Help America Vote Act website, you can access a list of accessible polling places. The web address is http://hava.state.pa.us. Building Inclusive Recreational Activities Project Update With the help of some volunteers and a grant from the Pennsylvania Developmental Disabilities Council, LVCIL is partnering with local temporary outdoor festivals like Musikfest and Mayfair with the intent of increasing accessibility and disability awareness. At the time of this writing we are gearing up for a preliminary walk-through/accessibility survey of Mayfair in Allentown. This first survey is to help prepare our volunteer surveyors for Musikfest in August. We have met with officials at ArtsQuest, the organization behind Musikfest, to discuss our collaborative relationship in making sure that people with disabilities can attend the festival comfortably. Mark Derry, a prominent accessibility consultant, was here in March to train CIL staff and volunteers on how to survey for accessibility. He taught us the ADA Accessibility guidelines and how to use the tools of the trade. We got to practice our new skills at the Bethlehem Public Library and Bethlehem City Hall. It was a great time! We look forward to the ongoing partnership with the local festivals and appreciate their enthusiastic cooperation! If you would like to be a part of this process please contact Joe at 610-770-9781 ext. 26 or joekrycia@lvcil.org. Prescription Medication & You By Debbie Rozear Persons with disabilities require more medical attention. Whether you take one or one dozen prescribed pills, capsules, gel caps, or liquid meds, be aware of what you are taking and what the drug is for. Keep an updated list of the drugs, dosage, and how many times a day you are using it. Update this paper every time your doctor changes the dosage, adds or removes a medication from your daily regimen. This may seem like a pain to do, however, it should only take a few minutes and may benefit you in the long run. Make two copies of this paper; one to keep with your medications and another that you should have with you when you go out. Keep the second copy in an obvious place, like your wallet, just in case of an emergency. When going out, this is not only a record for your own use; it can be a lifesaver in the long run. If you are out and there is an emergency, paramedics can see what medications you are on. When you receive your refills, make sure you check them each time before beginning to take them. First check the outside of the bottle to make sure the prescription is in your name and that it is the correct medication and proper dosage. When everything looks right on the outside of the bottle, look inside the container and make sure the pills inside are the same color and size that you have been taking all along. If there is something different about them, don’t be afraid to call your pharmacist and question him/her. I recently had this happen to me. One of the medications that I was taking for the past few years was different. On the outside of the bottle it was in the right name (mine and the drug name), and dosage on it. On the inside the pill was almost twice the size and a different color. When I called the pharmacist and asked if this particular prescription had changed in any way, he checked my files and listened to the description of the pill. He realized that the person filling the bottle had given me the right drug, but the wrong dose. The dose was almost 3 times the milligrams that I normally take and that could have been detrimental to my health. The outcome to this situation was that I returned the unused pill bottle. They gave me the correct medication and also refunded my co-pay for that month along with an apology. The pharmacist also commended me on double-checking the medication. It is important to do this. One other thing to be conscious of, when using generic drugs, the pills may look different in shape size and color then the original prescription that you may have started on. Be aware of this when changing from one med to another and never be afraid to call and ask your pharmacist. No one knows you better then you do. You are your own best advocate. Alternative Solutions for Prescription Drug Prices By Annette Drobil Betty received a prescription for an antibiotic to treat an ear infection that caused pain and difficulty hearing. The pharmacist told her that the cost of the drug would be more than she could afford. Betty decided to let the infection “run its course.” One month later, Betty had terrible pain and her ear was bleeding. She went to the emergency room and her eardrum had burst from the infection. She now was faced with hearing loss. Not taking a medicine, with the hope that you will get better or that your illness may ‘run it’s course’ most likely will not be a healthy option. There are a few things you can do to get medications at a lower (or no) cost. First, tell your healthcare provider that you are concerned about cost. They may provide free samples of the medicine. Many times, samples are for “branded,” usually newer, medicines. Be careful: if you receive a prescription for the same medicine, the cost may be high compared to an alternative drug to treat your illness. If a less expensive treatment is not available, request the generic form of your medicine. Be sure that the prescription states that the generic is to be dispensed. Tell the pharmacist that you would like to know the cost of the medicine before the prescription is filled. Be sure to speak with the pharmacist, not the cashier. If the medicine is too expensive, ask if they have any ideas about cutting the cost. A different, less expensive drug may be available that your doctor may not know about. Your pharmacist will need to discuss with your doctor any changes to the prescription. Sometimes drugs that come in tablet form can be cut into smaller dose sizes. This may be advantageous if purchasing fewer large tablets will cost less than buying more small tablets. This is tricky because the drug has to be cut into exact doses. It is important that your pharmacist help you with this option. Remember, don’t break capsules unless your healthcare provider tells you to do this The Partnership for Prescription Assistance program works with pharmaceutical companies, pharmacists and healthcare programs to provide alternatives for obtaining medicines free or at a low cost. The program is accessible on-line at http://www.pparx.org/ or by phone at 1-888-477-2669. If you know the name of the pharmaceutical company who manufactures the medicine prescribed, it is likely the company has a patient assistance program available to help with discounts. Examples of participating companies are Wyeth (1-800-568-9938), Merck (1-800-727-5400), Pfizer (1-866-776-3700) and Johnson & Johnson (866-317-2775). All programs and application forms can be accessed on-line. CAUTION: IF IT’S TOO GOOD TO BE TRUE…IT PROBABLY ISN’T TRUE!!! By Michele Marks Nowadays most people are heavily dependent on e-mail, instant messaging, and Internet searches. This awesome technology has made the world smaller and more accessible for both the Hearing and Deaf communities, but it has also exposed them to new dangers. One danger is “Phishing,” which is defined as “an attempt to criminally and fraudulently acquire sensitive information, such as usernames, passwords and credit card details, by masquerading as a trustworthy entity in an electronic communication.” (http://en.wikipedia.org/wiki/Phishing) In one phishing scam, a person is tricked into giving out their social security number, address, or other sensitive personal information including on-line passwords. You might receive an instant message or an e-mail from a very official-sounding e-mail address or domain name (such as officersmithFBI44@gmail.com (one example). You might be offered a very attractive sum (like $30,000). They may ask you to wire money through Western Union to an address in some other country (many times it is in Africa). THIS IS A SCAM----Do NOT send money; you will NOT receive any money from this person!!! If you wire money to them, you will NOT get that money back. WHAT CAN YOU DO IF THIS HAPPENS TO YOU? • File a report with your local police department (get a copy so you can give it to your bank, credit card company or whomever might need it) • Place a 90-day “fraud alert” on your credit report by contacting all three credit reporting agencies listed: Equifax (800) 525-6285 Experian (888) 397-3742 TransUnion (800) 680-7289 • Change all passwords to your on-line accounts (bank, credit card, etc.). It’s always a good idea NOT to release any personal information on-line. • File a complaint with the Federal Trade Commission • Record and save EVERYTHING connected to this scam—even if you think it’s not important, save it anyway. (More helpful suggestions and information can be found on http://www.microsoft.com/australia/athome/security/privacy/fraudvictim.mspx) CAPTIONING WOES: By Michele Marks Traditionally, deaf and hard-of-hearing persons have been excluded from news, entertainment, and other information provided through streamed videos on the Internet. “[If] I am tired and I missed my TV news…I can check on website. Sad, there is no caption, so I can’t watch,” laments Christopher Parker, a Deaf Parkland High School senior. He feels captioning on the web should be mandated by the FCC (Federal Communication Commission), just as it is for television. There are many ways to caption a video inexpensively; just a web search would bring up several possibilities. Of course, new technology appears to develop almost over night, while changes in law seem to take forever. If a person would like to see more captioned video on the web, what should he/she do? He/she could write to the National Association of the Deaf and let them know his/her feelings (nad.org). Also, he/she could complain against the news/entertainment website itself. Usually there is a link to “contact us” which will allow a person to e-mail a website representative. Are deaf/hard-of-hearing people the only ones who would benefit from captioning? Captioning could be an excellent learning tool for those who are learning English as a second language. Also, many hearing people benefit from captioning if they do not have speakers on their computers or if they just wish to keep their volume down. Christopher cites a benefit for hearing parents as well: “Some hearing [people] don’t want [to] turn on volume because kids [are] sleep[ing].” LVCIL at 18 - Let Freedom Ring! The 18th Annual Independent Living Celebration Join Us: Friday, July 25, 2008 Best Western Lehigh Valley Hotel & Conference Center Routes 22 & 512 Silent Auction: 4:00 - 5:30 p.m. Buffet Dinner Starting at 4:30 p.m. Keynote Speaker & Awards Ceremony: 5:30 - 6:30 Cash Bar Available. OUR KEYNOTE SPEAKER The 2008 Independent Living Celebration Keynote Speaker is Mark E. Smith. Born with severe cerebral palsy, Mark E. Smith began turning tragedy into triumph at an early age. Today he is a true disability icon as among the most recognized writers in the disability genre, and a true legend within the wheelchair industry, with his website, WheelchairJunkie.com, receiving over three million views per year. OUR REWARD RECIPIENTS This year, the Lehigh Valley Center for Independent Living will present three awards. The Mark J. Turbedsky “Torch of Independence” Award will be given to Carol Silvoy for her impassioned commitment to full inclusion for the Deaf and Hard of Hearing. The Chester R. Collyer “Key to Living” Award will be given to Karen Grady, Executive Director of the Arc of Lehigh and Northampton Counties for her leadership in and dedication to the empowerment of persons with cognitive, intellectual and developmental disabilities. And for the first time this year, LVCIL will be giving a brand new award - the Marilyn Burns Volunteer of the Year Award presented by AccessAbility. Our first recipient will be Gretchen Parseghian who has been a dedicated volunteer to LVCIL for over 12 years. PLEASE JOIN US Please see the back page of this issue of Livin’ for registration information. ILC Registration Information $25/plate.