Lehigh Valley Center for Independent Living Livin' Spring 2008 Director's Note Mike Smith: Mentor, Advocate and Friend. I never wanted to write this article. I still don’t, because as I put words to paper, it truly means that Mike is gone. Michael Smith was the best friend any wheelchair user could ever have, or for that matter, the best friend anyone could have. He was quite simply, a one man independent living movement. A few days before his 17th birthday, Mike broke his neck in a swimming accident. He hated his prognosis as a quadriplegic and he didn’t make life easy for himself or those around him at first. After rehab, he came to live in an Allentown nursing home. There are dozens of legendary tales of his anger and fortitude, including the time he defied the nursing home administrator, and told her to call the police if she didn’t like it. He told her the jail wasn’t accessible, so there was nothing they could do to him. As time and maturity had their effect on Mike, he began to see beyond a life as a nursing home resident. He graduated from William Allen High School and learned to drive an adapted van. He played sports. He began dating again. He set his sights on moving to his own apartment, and he did it. One of my personal favorite stories about Mike is that he then came back to the nursing home; this time as a full-time employee! Before long Mike had married his true love, Susan Kradjel. Mike and Sue became homeowners, and were then blessed with two children, Kendra and Kyle. He would eventually be hired by me to develop our LVCIL Community Support Services. And who would have ever guessed that after an early retirement Mike would be nominated to the LVCIL Board of Directors or that he would later be elected president of the Board for two consecutive terms? Mike said what he believed, and he didn’t budge. The hellion turned advocate, Mike was a true leader in the disability community. You had to admire his convictions, whether it was for the prohibition of all things containing sour cream and cream cheese (he hated them) or for what changes needed to happen in the disability community. This is pretty remarkable story for a quadriplegic, but there is more. Mike was not content to sit back and enjoy his rewards of independent living – he had to help other persons with disabilities to write their own stories of independence. Mike used himself as a change-maker. He spent countless hours guiding his peers on our paths to independence and he took action after action to improve the lives of others with disabilities. Mike used his van to help dozens of persons who could not drive. He drove people to work, family gatherings, sporting events, dinners out, vacations, malls, and night clubs. In fact, he helped many a young male nursing home resident acquire a state ID so they could go to the nightspots young men like. He was the glue in many discharge plans when his peers moved into independent living. And he was there for his peers when things went wrong. I remember him driving through the night to southern Virginia help to a recently disabled friend avoid homelessness. When my own mother died in 1999, Mike called me and quietly explained he wanted to lighten the load for my husband, daughter and I; would I consider allowing him to take off from work to drive us back and forth to the out-of-town services? If you have to use a wheelchair, you need someone like Mike to help you cope with it. In the years immediately before I began using a chair, Mike showed me that he was every bit a full and complete human regardless of the wheelchair. Once I began using a chair, I saw I could still be a whole person. He also gave me tips to live by, and told me when my dress was hiked up too high following a bathroom transfer. He taught me to be careful about my skin. He showed me those handy places on a wheelchair where you can hang and attach things, like your keys. He took me to public places and I learned to have fun and not see the stares. And did we have fun! One night Mike, Sue, my husband, Dave and I went to the movies. It was a large empty theater. As a bonus, our spouses helped Mike and I transfer out of our chairs to the comfy theatre seats at the end of a row. They tucked our chairs out of the way under the movie screen, and went for popcorn. At this exact time a couple approached our row and stood quietly by, waiting for Mike and I to stand up and let them pass by. They stared at us and began looking annoyed. They had no idea we used wheelchairs. Before I knew it, I blurted out, “Go ahead and step on him, he can’t feel it anyway.” Mike gave them a dead pan, “It’s true, go ahead.” At this point, I realized I was coping just fine, thanks to my friend. On November 21, 2007, Mike held firmly to his decision to refuse life-sustaining measures, and he died peacefully with Sue, his pastor, another friend and myself by his side. I still cannot find the right words to sum up this devastating loss. But I do know one thing. If you have a disability, you have two choices. Find your Mike Smith, or be someone’s Mike Smith. The world and you will be better for it. Amy C. Beck LVCIL Executive Director Upcoming LVCIL Events Client Assistance Program (CAP) The Client Assistance Program (CAP) is the State-wide advocate for individuals with disabilities who are seeking or receiving vocational rehabilitation services from the Office of Vocational Rehabilitation, Blindness and Visual Services and federally funded programs of the Centers for Independent Living. CAP can help you understand what vocational rehabilitation services are available to you and can advise you of your rights and responsibilities as they relate to these services for employment. CAP helps individuals be their own advocate and also help clients pursue appeals with the VR system if a resolution to their concern cannot be agreed upon. You can contact CAP at either the Philadelphia or Harrisburg office: Philadelphia CAP office (215) 557-7112 Voice/TTY 1-888-745-2357 Voice/TTY Harrisburg Office (717) 364-1733 Voice/TTY 1-888-367-2954 Please check out the website, www.equalemployment.org for lots of good information on CAP services and other resources. Food Stamp Enrollment Over the Phone The Pennsylvania Hunger Action Center helps clients apply for food stamps confidentially over the phone. The process saves time, and the staff can submit your application on-line, which takes about fifteen to twenty minutes. Se habla español. Call today! 1-800-634-2033 The Right Stuff About Renting On Tuesday, April 8, 2008, at 10 a.m. Todd Hacker from CACLV will present the Right Stuff About Renting at LVCIL. He will discuss the rights of a renter and some do’s and don’ts about renting accessible units. Please call Debbie Rozear at 610.770.9781 ext. 24 to register. Deadline for registration is April 1, 2008. 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: March 18, 2008 – The Nature and the Scope of Discrimination in Hiring Under ADA Title I April 15, 2008 - There Are No IEP’s in College May 20, 2008 – Employer Best Practices: Recruitment and Hiring of People With Disabilities June 17, 2008 – Accommodating Employees with Psychiatric Disabilities in the Workplace An End to “For CIL” in Livin’ The Bargain Block will no longer be featured in our newsletter. Bargain Block listings will still be available on the LVCIL website (www.lvcil.org/forsale.aspx). To list items please contact Corrina Passaro at (610) 770-9781 ext. 20 or by e-mail at corrinpassaro@lvcil.org. The information for listing items will be available from now on, on this page of the newsletter. 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. In Memory On Monday, December 10, 2007, Marilyn Burns, wife of LVCIL Board President Tom Burns, passed away. She was a friend of the Lehigh Valley Center for Independent Living, Inc. for our entire 17 year history. In fact, Marilyn was a member of Operation Overcome, the grassroots group which gave birth to LVCIL. She was a dedicated volunteer and recipient of the “Putting Up With Tom” award at our annual volunteer recognition event for nine years running! We cannot fully imagine LVCIL without her and her classic style. She touched many lives through her volunteering and she will be greatly missed. The staff at LVCIL extend our warmest sympathies to Tom and his family. LVCIL Freewheelers Get Out & Get Exercise Join a Team at Your Intensity Level Basketball Practice at the Bethlehem YMCA Practices are Thursdays 7:45 to 9:10 pm 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 pm 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 March 29, 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 Lehigh Valley Action Team Ready? Set. VOTE! by Joe Krycia Justin Dart Jr., a long-time advocate for the rights of people with disabilities was quoted as saying “Vote as if your life depended on it…because it does.” Justin recognized and understood what it took to effect change in an environment where people with disabilities are a minority. As a person whose life is touched in some way by a disability, you are in an important and unique position to make a difference. You have an opportunity to effect change by showing candidates that the disability voting population is a powerful group, essential to them being elected. Politicians pay attention to groups of voters that they think will have an impact at the polls. This is why we need to get the disability community out to vote in force. Issues that are important to people with disabilities will be a priority to politicians when they see the amount of votes that they stand to gain by listening to those who have a disability. You have a voice! What can you do? Most importantly - register to vote! Educate yourself on issues that are important to you and choose a candidate that best fits your ideals. Find out where your polling site is ahead of time and inquire about the accessibility. Remember: We are here to help. Please contact Joe at 610-770-9781 ext. 26 if you need any assistance with the voting process! Important Election Dates March 24 : Last day to register before the Primary Election April 15 : Last day to apply for Civilian Absentee Ballots April 18: Last day for County Boards of Elections to receive voter Civilian Absentee Ballots April 22 : General Primary April 29 : Last day for County Boards of Elections to receive Overseas Absentee Ballots (Postmarked no later than April 21) ADA Restoration Act The Americans with Disabilities Act (ADA) was signed into law in 1990. The purpose was to provide protection against discrimination for people with disabilities. Although there was overwhelming support for the law when it was passed, it has been continuously weakened over the years. The loose interpretation of the ADA by the court system has allowed for an erosion of the protection that it was originally intended for. Courts have been quick to decide against people with disabilities who allege discrimination in the workplace at an alarming 97% of the time. These decisions have set precedents for other cases and have made it easy for an employer to say that a person is too disabled to perform a job function but not disabled enough to be covered under the ADA. The ADA Restoration Act is a vital piece of legislation that works to return the Americans with Disabilities Act back to what it was when it was first introduced. Please encourage your legislators to co-sponsor and support this bill and thank the ones who already have. For more information, sign a petition, contact congress, or tell your ADA story you can visit www.roadtofreedom.org. Feel free to contact Joe if you have any questions at 610-770-9781 ext. 26. Lehigh Valley Action Team Meetings Lunch & Learn Bring a Brown Bag Lunch! Crafts with Jean - 10:30 Meeting from 11:30 - 1:30 p.m. Upcoming Dates: March 12 April 9 May 14 Join other advocates to discuss important issues such as the Americans with Disabilities Act (ADA), Housing, Transportation, Employment, etc. Contact Joe Krycia for more information at (610) 770-9781 ext. 26. Future Advocates Now Meeting Join other youth advocates to discuss issues which are important. Meetings held at LCCC in Schnecksville. Upcoming Dates: February 23 March 15 April 19 (at LV Mall) For information on meetings and times please call Robbie at (610) 770-9781 ext. 29. Everyone Has a Story to Tell By Debbie Rozear It all started one winter day when my phone was ringing. A man named Wayne called to find out what services LVCIL could provide him. As I am writing this, Wayne & I know each other for 11 months and in this short time many things have transpired. I explained what our services were and how he could utilize our agency to best benefit himself. Wayne had mobility problems, no transportation, and no friends or family to provide him a ride to LVCIL in order to fill out the necessary intake forms. He and I scheduled an intake for a few days later in the afternoon, so that my husband could take me to the appointment. On the day of the intake, I phoned Wayne to confirm our appointment. When the time came for me to leave for the intake, my ride didn’t show up. I called Wayne and asked him if I could reschedule, because of transportation difficulties on my part. I had the intake packet all ready to go. I left it on my chair and thought I would get to it in the next day or two. Little did I know that after arranging another ride home, I would find out that my husband had unexpectedly passed away. Needless to say, I never did get to do the intake with Wayne. One of my colleagues went and did the intake for me and had started the ball rolling before I had returned to work. At LVCIL the staff is a close-knit family that is there for each other in good times and bad. When something happens to one person, everyone else is there to chip in and make everything run smoothly. In the following 11 months Wayne and I have phoned each other many times about his housing issues. He has found a new place to live but eight days before moving he called me and told me that he thinks he had a stroke in the middle of the night. He said he didn’t know what to do. I convinced him to get off the phone with me and dial 911. Eventually, he called for an ambulance. Wayne has since recovered from a mini stroke, has moved, and says that he is indebted to me for making him get medical help. Within just the past few days he has received a Section 8 voucher to help him with his rent. This is such a welcome addition to his monthly income. Just freeing up that little bit of extra cash, which can be applied to other expenses that are necessary for his daily living, is helpful. Wayne calls me on a regular basis to give me bits of information and also refers people to me that are disabled and in need of our services. Several months ago a staff photo was placed into the newsletter and Wayne told me that he now knows whom he is talking to when he calls here to our office. Within the past month, Wayne and I finally met. Honestly, the only reason that we met is because he had me helping a person who was homeless and disabled and that person moved into the same building that he presently lives in. Wayne is always paying forward to someone else for all of the good fortune that he has had bestowed upon himself. Paying forward this kindness is what makes the world a much nicer place to live. Wayne touches many people’s lives and brings along a ray of sunshine. I remember one such time when I sounded a bit down on the phone. He said these words to me, “Shared sorrowed is half sorrow. Shared joy is double joy.” What's Contagious and Good For You By Annette Drobil Humor is serious. Laughter is the best medicine. In a letter posted on the Muscular Dystrophy Association website, Glenn Harwood writes about his diagnosis of Amyotrophic Lateral Sclerosis (ALS), a disease that affects the nervous system and causes the loss of control over muscle movement. He keeps a list of jokes collected from friends with him at all times. His motto is “Can’t Walk or Talk But Can Always Laugh.” When dealing with any illness, it is important to remember the positive benefits of humor. Having a sense of humor helps maintain a positive attitude and can reduce stress. There is even a field of medicine called psychoneuroimmunology devoted to the relationship between mind and body and its ability to heal. Research has revealed that laughter appears to change brain chemistry and help strengthen an individual’s immune system. Contagious laughter is a lot more fun to catch then the common cold. Recently, a colleague of mine lost a great friend and former coworker. This loss was clearly difficult for her to work through, yet she took the brave, emotionally fraught step of sharing the wonderful legacy of her friend. The stories were mostly humorous, laced with examples of his charitable acts. It conveyed to me a sense that I’d missed knowing someone important. Hearing that this individual had a sense of humor and used it to its full effect, made me feel like I knew him personally. There are plenty of ways to bring a bright spot to your day through laughter, like renting a hilarious movie or calling a friend to say “I need to have a good laugh; can you help me out?” If you use e-mail, ask to be on your friends’ distribution list for jokes. It is also important to remember sensitivity. When sharing jokes, be respectful of all people and be careful not to offend any one race, sex or religious preference. Did you know that it takes 15 facial muscles to laugh. Another benefit to laughter – it’s a great workout! Sign Language Interpreter Referral Service Michele’s Opinion: Are you as disappointed as I am? Like many of my friends, I watched the entire Superbowl, beginning to end, awaiting the airing of “Bob’s House”, the Pepsi commercial performed completely in ASL, captioned for the “signing-impaired” community. To my dismay, it never aired; I thought it was dropped, which made me angry. After doing some research, I discovered that the commercial was aired during the pre-game show, between 4:00 and 5:00 p.m. “Who watches the pre-game show?” I exclaimed! Is it REALLY a SUPERBOWL commercial if it’s aired PRE-GAME? What a rip-off! Anyone else agree? You can still catch the commercial, along with the history of the huddle, on Pepsi.com/bobshouse and YouTube.com. Thank goodness for the internet! Plans Being Made for a Summer Camp for Deaf/HOH Children. Janice Kavounas, a local mother of a deaf child, held a meeting on Wednesday, February 6, 2008 to discuss the development of a local summer camp that is completely accessible for deaf and hard-of-hearing children. Several area parents, as well as some Deaf adults, gave their input on such issues as funding, location(s), transportation, and interpreter/aide needs. The next meeting will be March 12, 2008, at 7:00 p.m. at St. Michael’s Byzantine Catholic Church, 156 Green Street, Allentown, PA 18102. It will be held in the church center located across the street from the Church. If you would like to express support for the camp idea, please write to Janice at janicek@rcn.com. How About a Movie? The film There Will Be Blood, has a lot of buzz surrounding it for Daniel Day-Lewis’ portrayal of oil man Daniel Planfield. What you may not know, is that the secondary plot surrounds his son becoming deaf and his father’s ability to “accept” the child’s disability. The young actor who plays the son is not a deaf actor, but the older version of H.W. Plainfield is played by deaf actor, Russell Harvard. Russell Harvard attended Galludet University where he studied acting. For more information on him, visit his official website at www.russellharvard.com. For information on the film, visit www.therewillbeblood.com or check local listings for showtimes. Financial Assistance Available for Deaf and Near-Deaf Persons Travelers Protective Association, a community service organization, has established a scholarship trust for Deaf and hard-of-hearing persons to assist in the paying of medical costs associated with hearing loss. To receive an application in the mail, please contact: TPA - Post “L” Pat Karabin 1601 Penny Drive Bath, PA 18014 Also, be sure to stop at Travelers Protective Association’s booth at KidsFest 2008 held at Allentown Fairgrounds’ Agricultural Hall on April 6. As part of their “Watch That Child” program, they will be giving away important child safety items, such as DNA collection kits and child safety seat ID stickers. Lehigh Valley Center for Independent Living also has a limited supply of these items; for more information, contact michelemarks@lvcil.org. Sign Language Club Schedule for Spring 2008 Wednesday, March 19, 2008 April & May Dates To Be Announced 7 p.m. to 9 p.m. Borders Books & Music Cafe 1937 Maccarthur Road Whitehall, PA 18052 (Back left corner of store) A Message from Joe Scott, President of Easton Coach First of all, I am grateful to the CIL and its management for the opportunity to include my short message to its membership in its newsletter. In recent months, the CIL and its staff have been instrumental in our new driver training program by volunteering time to educate our staff on being more aware and sensitive to the challenges faced by people with disabilities and how it relates to transportation. All of our new drivers undergo three full weeks of training before they “go solo”. Even though we’ve always dedicated two or three days of that time to customer sensitivity matters, we’ve never had training that had anywhere near the impact that we’ve experienced with the on-site instruction at the CIL. I’m hoping that this program develops even more in the future. You may have noticed that LANTA has put ten new paratransit buses in service in the past three months and plans to put as many as fifteen more in service by the end of the winter. After careful consideration and testing, LANTA opted to purchase Chevrolet vans after many years on using Fords. The response to the Chevys has been very positive both from our drivers and passengers who find the new vehicles smoother and more comfortable. We’re interested in what you think so tell our drivers or customer service folks what how you like these new buses. It’s important to me that your experience with the Metro Plus service be enjoyable. If you have any issues I’d be appreciative if you contacted our office staff to outline your concerns. Also, I want to make sure that you all know what contact numbers to use when your bus is late or if you need to talk to someone immediately. Here are some very important phone numbers: Main Number 888-253-8333 or 610-253-8333 Important extensions: Dispatch office x1027 (or selection #3 from the main menu) Customer Service x1044 (Bruce Cohen) Scheduling matters x1020 (Dwayne W.) or x1039 (Matt R.) Metro Plus Operations Manager x1054 (David Batchelor) Metro Plus Asst. Manager x1091 (Jane Kochenash) GoodSearch and LVCIL By Corrina Passaro The Internet is helping non-profits raise funds in unique ways. In the past issue of Livin’ there was an article about IGive.com and how it generates donations for non-profits through on-line shopping. There is now a website called GoodSearch.com that donates to your selected non-profit, such as the Lehigh Valley Center for Independent Living, everytime you use it to search the Internet. The site is powered by Yahoo! So users will receive the same quality results if they had used Google, Yahoo, or MSN. The site donates 50% of the revenue generated by advertisers to the designated non-profit. In order to generate donations for the Lehigh Valley Center for Independent Living, you must first select our non-profit from the website. It’s very easy to do by searching for us. The site will store the information so that the next time you search it will be set on LVCIL. There is also toolbar available for Internet Explorer. Having a GoodSearch toolbar installed will help users remember to go to GoodSearch. To learn more about the site, please visit www.goodsearch.com. LVCIL BOARD OF DIRECTORS: Dr. Scott Berman Tom Burns (P) Nicholas Butterfield Sheila Costanzi Cynthia Davis Jean Feldman Glenn Firman Chris Gonella Thomas Harp Dr. Sweety Jain Bob Linney Laird MacCubbin Dr. Lisa Marie McCauley (T) Ham Malek Gretchen Parseghian (S) John Rohal Jeanette Schmoyer Our Staff: Bob Amelio, Jr. Community Support Coordinator: bamelio@lvcil.org ext. 11 Amy Beck Executive Director: amybeck@lvcil.org ext. 14 Annette Drobil Community Support Coordinator: annettedrobil@lvcil.rog ext. 27 Robbie Graves Assistant Director: robgraves@lvcil.org ext. 29 Linda Hetherington SLIRS Fiscal Assistant: lindahetherington@lvcil.org ext. 12 Jodie Jones SLIRS Program Assistant: slirsassistant@lvcil.org ext. 16 Joe Krycia Community Support Coordinator: joekrycia@lvcil.org ext 26 Michele Marks SLIRS Program Coordinator: michelemarks@lvcil.org ext. 21 Brenda Palmer Administrative Assistant: brendapalmer@lvcil.org ext. 15 Corrina Passaro Development Coordinator: corrinapassaro@lvcil.org ext. 20 Debbie Rozear Community Support Coordinator: debbierozear@lvcil.org ext. 24 Cara Steidel Fiscal Coordinator: carasteidel@lvcil.org ext. 13 Jodie Steiner Information Editor: jodiesteinter@lvcil.org ext. 22 Lehigh Valley Center for Independent Living, Inc. 435 Allentown Drive Allentown, PA 18109 “Providing services to persons with all types of disabilities” A member of the PA Council on Independent Living (PCIL), a consumer controlled state association of Centers for Independent Living (CIL’s) LIVIN’ is a quarterly publication of the Lehigh Valley Center for Independent Living, Inc. LVCIL provides information and services to people with disabilities, and other service organizations in Lehigh and Northampton Counties. Businesses or Individuals may sponsor issues of LIVIN’. March 2008 - May 2008 Edition Volume 44 Contact Us: Phone: (610) 770-9781 Fax: (610) 770-9801 TTY: (610) 770-9789 Email: info@lvcil.org Web Site www.lvcil.org Editor: Corrina Passaro corrinapassaro@lvcil.org Graphic Design: Bob Amelio bamelio@lvcil.org