Message from Maryland’s Governor It is my pleasure to congratulate Caring Communities and the 8th annual World of Possibilities Expo. For over 10 years, Caring Communities has sought to address the needs of so many parents in our State, and for that we owe this organization and this magazine our gratitude. Caring Communities and the World of Possibilities Expo connect so many of our neighbors to vital services and information. Thanks to the efforts of so many caring parents, care providers and volunteers, over 400 people have been trained to provide essential respite care services to Maryland families through the Caring Network. This year, as we work towards a better, stronger Maryland, we have tremendous progress on which to build. Over the past year, we have taken action on important initiatives to empower our neighbors and improve our quality of life. First, we launched the Employed Individuals with Disabilities Outreach Initiative which increases access to work without endangering medical benefits from Medicare and Medicaid. Second, we are offering the “Money Follows the Person” Rebalancing Demonstration Project will help transition individuals from institutions who want to live in the community. This is a grant that the U.S. Centers for Medicare and Medicaid Services awarded Maryland in the amount of $67 million over a five-year period to support the state’s efforts to rebalance the long-term care system so individuals would have a choice of where they live and receive services. Third, we have the Maryland Technology Assistance Program (MD TAP) which arms thousands of individuals with disabilities, families and professionals with assistive technology and services. That includes information on securing assessments, trying out devices, and receiving funding and training. Where necessary, we are also making loans more available to our people. Finally, we are also continuing to move emergency preparedness forward through coordination with the Maryland Emergency Management Agency as well as key local emergency planners to assure that people with disabilities will be able to receive timely and accessible voice and text notification in the event of an emergency. Together, united in the dignity of every individual and in our responsibility to advance the common good, we are building the One Maryland we hold in our hearts. Working together with groups such as Caring Communities we can continue that progress to make sure every one of us has the opportunity to make a meaningful and positive difference in this world.
Thank you for your passion and perseverance. Governor M artin O’M alley
Welcome...
We are pleased to bring you the fourth edition of World Of Possibilities Magazine™. Our goal is to bring you an informative, easy to read magazine written for the entire disabilities community. The challenge was to offer both helpful features that focus on specific disabilities issues unique to certain readers and articles that highlight topics most persons with disabilities, their families and service providers would find of interest. World Of Possibilities Magazine is arranged in color coded departments to give the reader an easy job of finding features that interest them. Here’s what you can expect in this and every issue: Living In A World Of Possibilities: Stories of hope, persistence, and determination. Features to help you live better, more fully. At Home: Support for you and your family, modifications, equipment you need or want to live independently. Education: School, after-school, adult education. Early intervention to transition to the world of work. Work Matters: Finding and keeping the right job, starting a business, workplace issues and who can assist you. Free Time: Sports, recreation, travel and vacation. Trends: What’s new in the disabilities community. Advocacy issues, laws and lawmakers. Health: Issues and topics affecting your physical health and well-being. Published Annually by: Caring Communities in collaboration with Milestone Media Group, Inc. 5360-E Enterprise St., Eldersburg, MD 21784 410-549-5707 • 1-866-227-4644 • Fax 410-549-6467 E-mail: info@caringcommunities.org Website: www.caringcommunities.org OUR STAFF Mona Freedman, RN EXECUTIVE DIRECTOR / PUBLISHER Jay Freedman EDITOR Beth Anne Bloom PRODUCTION MANAGER PRODUCTION ASSISTANT Scott Reese Cecilia Oh PRODUCTION ASSISTANT Donna Forman SALES ACCOUNT EXECUTIVE Robbin Davlin EXPO COORDINATOR Bizmarquee.com WEBSITE DESIGN
Copyright 2011 Caring Communities, Inc. All rights reserved. Caring Communities does not endorse any product or service listed or advertised in this publication. We reserve the right to reject any advertisement or listing that we feel is not in keeping with the publication’s standards. The publisher has made every attempt at accuracy. We do not assume any and hereby disclaim any liability to any party for any loss or damage caused by errors or omissions in this publication. Reproduction of any part of World Of Possibilities Magazine™ is permitted only with written permission of the publisher.
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Around Our Office: The latest news from Caring Communities’ office. Something is always in the works! Agency Highlights: News from local agencies supporting persons with disabilities and their families. Directory Of Services: Alphabetical list of Advertisers who made it possible for World Of Possibilities MagazineTM to reach you! Please support them and tell them you saw their ad here. Books & Resources: Books and other resourses of interest within the disabilities community.
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Living In A World Of Possibilities . . . . . .4 At Home . . . . . . . . . . . . . . . . . . . . . . . . . .14 Education . . . . . . . . . . . . . . . . . . . . . . . .18 Work Matters . . . . . . . . . . . . . . . . . . . . .22 Free Time . . . . . . . . . . . . . . . . . . . . . . . .27 Trends . . . . . . . . . . . . . . . . . . . . . . . . . . .30 Health . . . . . . . . . . . . . . . . . . . . . . . . . . .36 Around Our Office . . . . . . . . . . . . . . . . .42 Books & Resources . . . . . . . . . . . . . . . . .44 Agency Highlights . . . . . . . . . . . . . . . . .46 Travel . . . . . . . . . . . . . . . . . . . . . . . . . . . .48 Directory Of Services . . . . . . . . . . . . . . .50 Publisher’s Acknowledgement: Caring Communities would like to thank the agencies and individuals for their editorial submissions: Aimee Murray, Mac's Team Marcia Callan Anna Renault Maryland Division of Bill Davis Rehabilitation Services (DORS) Dean Suhr, President: Maryland Rx Card MLD Foundation Maryland State Department of Dr. Errol Gray, Education EX N’ FLEX International Maryland Transitioning Youth Ford C. Waggoner, Easter Seals Maryland Department of Harvey Levy, DMD, MAGD, LLSR Disabilities Jim Hasse, GettingHired.com Sharon Gardner John Martindale, Stephen L. Crowder Brothers Services Company The American Music Therapy Joseph L. Romano, Association Attorney at Law The National Sports Center for Judith Scott the Disabled Karen Simmons The Arc of Frederick County Liz Water, Aquatic Access, Inc. Wendy Goldband Schunick
World of Possibilities
Consider the Benefits of a Special Needs Camp Byline: Ford C. Waggoner, Easter Seals Camp Fairlee Manor
Swinging high over the trees on a zip line, walking the high ropes, or canoeing are examples of activities that children and adults of all ages and abilities enjoy. The benefits are numerous for anyone, but even more so for children and adults with cognitive or physical disabilities. In addition to enjoying all the fun activities of a summer camp, persons with disabilities gain numerous benefits from attending a special needs camp for children and adults. For persons with disabilities, summer camp is the one time of year when they break out of a routine. A week of summer camp is an opportunity to relate to other individuals with similar needs, often building lasting friendships and easing a sense of loneliness and isolation. Camp typically provides opportunities for outdoor activity and exercise which is beneficial and often hard to obtain in other settings. While all camps are accessible to some degree, special (Continued on page 5)
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needs camps go the extra mile to not only make the accommodations accessible, but also to make the activities accessible. At Camp Fairlee, it is not uncommon to see a wheelchair user swinging high over the trees on the zip line or high ropes. Typical camps may have a ratio of six campers to every counselor, but camps like Camp Fairlee typically improve the ratio to three to one, and in the case of Autism weeks, one to one. If you are a caregiver to a child or adult with a disability, consider a summer camp for their benefit, and for yours! Easter Seals addresses the need for accessible camping with its location near Chestertown, Maryland. Fairlee Manor Recreation and Education Center is a beautiful, residential, recreational and respite camp on 250 sprawling acres on Fairlee Creek which offers campers from age 6 and up the opportunity to experience the joys and challenges of camp in a fully-accessible setting.
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Out Came The Sun
POSSIBILITIES ................................................................................................ One Family’s Triumph Over a Rare Genetic Syndrome
by Judith Scott At three months old, Emily Scott is diagnosed with a rare chromosomal syndrome called Partial Trisomy 13. Her mother Judith is told that Emily’s condition guarantees delayed development and a myriad of health problems. For the first year of Emily’s life, Judith watches helplessly as her daughter undergoes abdominal, open heart and kidney surgery. Faced with Emily’s grim prognosis, Judith and her family begin a relentless campaign, creating a small army of therapists and medical specialists to help Emily live her life to its fullest potential. Miraculously, Emily’s health eventually stabilizes and her development slowly begins to progress. Yet for Judith, life takes a turn for the worse. When Emily is six years old, Judith becomes pregnant again. A subsequent test determines that the child will be born with
Brains for Brain
Emily’s debilitating syndrome. Judith and her husband find themselves living every parent’s worst nightmare—and are forced to make an agonizing decision. Out Came The Sun is a wrenching account of a child’s struggle, a mother’s despair, and the unshakable bond forged in the face of adversity. Scott captures the raw truth and emotion associated with learning of the lifelong limitations of a child. She tells her story with a rare clarity, illuminating a subject not often discussed with such candor. Hers is a story of healing, of survival and growth. Scott speaks to the human condition -- the pain of loss, the triumph over weakness, and the strength of family. Emily's story, and that of her family, Out Came the Sun: A Family's Triumph Over a Rare Genetic Syndrome, was published by Academy Chicago Publishers in November, 2008. The book is available at major booksellers and also online at Amazon, Borders, and Barnes and Noble.
www.brains4brain.eu or mldfoundation.org/research-brainsforbrain.html The Brains for Brain collaborative started in 2006 when a small group of researchers, with the help of four drug companies, agreed to collaborate to focus and accelerate their work studying issues related to the developing therapies that needed to be effective in the brain. In four short years the consortium has grown to nearly a hundred researchers representing 60 universities, 12 European countries, the US, Brazil and Australia. Their annul meetings are a hotbed of presentations and discussions of ongoing research particularly focused on the blood-brain barrier (BBB). Among the more than 500 types of hereditary metabolic diseases known today, there is a group of about 40 diseases, called lysosomal storage disorders, manifested by significant irreversible degenerative effects against brain and central nervous system. MLD is a lysosomal disease (as well as a leukodystrophy). 6
The work of Brains for Brain are not just beneficial for the lysosomal diseases, but also will help improve treatments and therapies to address more common disease such as Parkinson's disease and Alzheimer's disease. The blood-brain barrier is a network of capillaries which protects the brain from harmful substances, and is a major barrier to allowing therapies to get to the specific brain cells that need repair. This natural barrier is essential to protect the brain, since it filters the chemical compounds that circulate in the blood and prevents damage to the central nervous system, but in doing so, prevents the absorption of drugs administered for diseases that affect just the brain tissue. Some substances, like alcohol, can readily cross the BBB – but alcohol is a small molecule whereas the proteins and enzymes necessary for to fix and control (Continued on page 7)
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Mac’s Story
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. ............................................................................................... POSSIBILITIES By Aimee Murray, www.macsteam.org Cormac ‘Mac’Michael Murray was born a healthy beautiful baby boy on September 10, 2004. He checked out perfectly and we were home in 24 hours ready to begin our new life as a family. After hitting many of the infant milestones such as sitting up, crawling, eating solids, saying some words, we began to have concerns around 18 months. The manner in which Mac ‘walked’or attempted to walk was awkward at best – both of his knees were hyperextended back and what few little steps he did attempt to take always ended with him falling. We were trying hard not to compare Mac to other children, but all of his little friends the same age were walking quite proficiently at this point. Brains for Brain (Continued from pg. 6) The beginning of the road leading to Mac’s final lysosomal disease are very large. Brains for diagnosis started at his 18 month well visit – his Brain is working to better understand how pediatrician agreed with us that something was the basic science of how the blood brain not right – he referred us to an orthopedic barrier works. doctor at that point because it appeared to him The first project for the Brains for Brain consor- (and to us honestly) to be a hip or knee problem. tium is unique in other ways, too. Their initial After checking out fine at the orthopedic two-year MLD Core consisting of 8 projects is appointment, the doctor said he would like to multinational and requires the researchers to see Mac back at age 2 and if he was still not share their progress at several points along the ‘walking’then he would refer us to a neurologist. timeline. This optimizes the work of all of the Brian and I were floored. No way could we wait other projects by emphasizing successes and sharing discoveries (both positive and negative) 6 months until Mac turned 2 – if there was early and often. With this philosophy the other something wrong we needed to know as soon as possible so we made an appointment with a researchers do not have to wait until the end children’s neurologist at Johns Hopkins. of the project to learn from what didn't We got in right away and Mac did amazing at work – they can adapt and learn much more quickly. They also have taken a rounded this initial evaluation. He had quite a few words at this point and was taking a few steps albeit approach with a mixture of basic science, natural history, and potential therapy research they were incredibly awkward. We left the neurologist’s office that day with a diagnosis of in the initial MLD Core. ‘mild cerebral palsy’. We left the doctor’s office (Continued on page 9)
www.caringcommunities.org
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MLD - Metachromatic Leukodystrophy By Dean Suhr, President: MLD Foundation, Celebrating its 10th year: www.MLDfoundation.org
POSSIBILITIES ................................................................................................
MLD is a rare neurometabolic genetic condition affecting 1 in 40,000 births. About half of those affected are infants who progress normally until age 18 to 24 months when they start to lose their motor skills. The progression is rapid and then may plateau for months before the decline starts again. They stop walking, turning, speaking, feeding themselves, swallowing, lose all muscle control, may experience seizures and loss of tone, some go blind, and usually within 3-7 years they die. The adult form of MLD has an onset often around age 40. It most often initially presents as a loss of cognitive skills – forgetfulness, lying, stealing, inability to perform multi-step tasks and then the motor skill problems start to occur. The juvenile form can present first with either motor or cognitive problems. MLD is an inherited condition and is not contagious or passed along except by birth. The disease is autosomal recessive meaning that both parents carry the defect and both males and females may be affected. One in every hundred people is a carrier, and the chances of two carriers having a child affected with MLD is one in four, or 25% with every birth. Statistically, 50% of their offspring will be carriers. Carriers lead a normal life and unless a parent or sibling has been previously diagnosed with MLD they often do not know they are carriers. MLD is short for metachromatic leukodystrophy. Translated from doctor talk, MLD means meta change, chromatic - color, leuko - white matter, dystrophy - degeneration. MLD is a degeneration in the white matter of the brain. Staining showing a color change was how the disease was first observed in 1933 by Dr. Joseph Godwin Greenfield, an English professor. MLD was first called Greenfield's disease. Staining is no longer used today to detect MLD. There is not an effective newborn screen for MLD so the diagnosis is usually made, unfortunately, after a patient is already showing progression of the disease. A MRI can give a preliminary indication of a leukodystrophy and the diagnostic test 8
is a blood test followed up by a confirming urinary sulfatide test. The challenge is that it often takes months, or years in the case of the older patients, for the medical staff to recognize that the progression is not some minor behavioral or motor aberration. Misdiagnosis of delayed development, ADD, ADHD, and sometimes even MS, are common. Most families go through some period of misdiagnosis with resulting improper care and therapies that often reduces everyone's quality of life. We believe that many juvenile and adults cases are never properly diagnosed because the patient is put on drugs to counter the behavioral problems and the core physical symptoms are never examined. People who are affected by MLD lack an enzyme in their blood called Arylsulfatase-A, (ARSA). Without this enzyme, sulfatides, a normal byproduct of cell life, are NOT broken down and instead build-up in the white matter of the brain – the central nervous system (CNS), and the peripheral nervous system (PNS) – causing destruction of the myelin sheath, or demyelination. The myelin is the "insulation" on the nerves that enables them to carry messages from and to the brain and the rest of the body. Without an intact myelin sheath the nerves essentially short out and the signals are confused or completely interrupted. This loss of communication accounts for the loss of acquired functions, paralysis, blindness, seizures and eventual death seen in MLD. At this time there is no cure for MLD. The only therapy currently in use is a stem cell transplant (SCT) – historically called bone marrow transplant (BMT). The SCT is most effective in slowing the disease in people who are not already showing any significant symptoms of MLD (presymptomatic). SCT's have a notable mortality risk, seldom completely stop the progression of the disease, and often the patient progresses more rapidly during the transplant process itself. A Gene Therapy clinical trial started in 2010 in Italy using the patient's own genetically modified (Continued on page 9)
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. ............................................................................................... POSSIBILITIES Mac’s Story (Continued from pg. 7) that day with strict instructions to ‘make college plans’ because Mac would ‘get better at doing it badly (walking)’ with physical therapy and braces. Fast forward roughly one year, and after many grueling physical therapy sessions and hours of stretching at home and wearing braces, Mac was not getting better at doing anything – in fact, he was getting significantly worse. He was not taking any steps anymore, he was not saying many more words, his hands had begun to shake, he had had a few seizures (we were told these were febrile seizures and common in children). In general he seemed uncomfortable and downright unhappy at times. We were frustrated and sad for him. On the recommendation of a friend, we made our way over to Kennedy Krieger Institute to see a doctor there who specialized in cerebral palsy. After a very thorough initial examination so that they could get a ‘baseline’ for Mac, they were not ‘sold’ on the cerebral palsy diagnosis but only recommended PT and OT at this point. We scheduled a follow up appointment for 6 months later. At the MLD (Continued from pg. 8) 6 month follow up appointment they agreed that and repaired cells for a SCT. It is too early to Mac was getting worse and ordered his blood and know how effective this therapy will be. An urine tests. They suspected a type of enzyme replacement therapy (ERT) has also Leukodystrophy but were not sure which one yet. I been in clinical trial. The theory behind an ERT is will never forget Mac’s new doctor saying on the that the patient would have an injection of an day they took his blood and urine, “it is never a ARSA enzyme every week or two which would good sign when milestones are lost”. make up for the enzyme that their body does not manufacture – similar to what diabetics do with One month before Mac’s 3rd birthday the test insulin. One of the difficulties with ERT is getting results were back and we received the news that Mac had a rare, genetically inherited, terminal the enzyme to cross the blood-brain barrier to disease called Late Infantile Metachromatic get to the myelin around the nerve cells. The MLD Foundation is celebrating its 10th year Leukodystrophy, or MLD. There is no treatment and there is no cure. With modern medicine and of serving families with MLD. Our mission is therapies we are able to keep Mac comfortable summed up in "We C.A.R.E", Compassion for families, increasing Awareness, influencing and but he has lost everything due to this devastating disease. He is 6 years old and he cannot walk, talk, funding Research and facilitating Education for swallow, move his limbs, sit upright, hold his head MLD. The MLD Foundation hosts conferences around the world bringing families, researchers, up or smile. He lives every day like a CHAMPION industry, regulators, and policy makers together and he is our hero and our inspiration. to improve the quality of life of those with MLD You can learn more about Mac and MLD here: and to expedite the research towards a cure. www.caringbridge.org/visit/cormacmurray Visit us online at MLDfoundation.org and www.macsteam.org www.caringcommunities.org
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20th Anniversary of the ADA Celebrated with a Look Back and a Look Forward
POSSIBILITIES ................................................................................................
For more information: www.dors.state.md.us/DORS/RehabResources/DORS_Spotlight/ADA_20.htm July 26, 2010 marked the 20th anniversary of • “With dramatic decreases in wait times the signing of the Americans with Disabilities for DORS services, together we move forward, Act, the landmark federal civil rights law that not back!” prohibits discrimination on the basis of disability. • “With a nearly 55% increase in investment, DORS was one of the co-sponsors of Maryland’s even in the toughest of times, to create employADA anniversary celebration, which was organ- ment and higher education opportunities for ized by the Department of Disabilities and held young people with disabilities -- these are in the beautiful Warehouse building of Oriole investments that allow us to support 600 Park at Camden Yards. additional people -- together in Maryland we More than 400 Marylanders with disabilities, move forward, not back!” disability advocates, public officials and others The ADA anniversary brought together many joined together to remember the journey to the facets of Maryland’s disability community – indiADA through exhibits and guest speakers, to cel- viduals with disabilities, DORS and other State ebrate the gains that have been attained in the and local agencies and officials, community 20 years since the law was signed and to recom- partners, advocacy groups – to look back on the mit to the road still to be traveled. struggle that led to the ADA and to celebrate In his remarks, Maryland Governor Martin what’s been achieved in the 20 years since. It O’Malley noted that, “This is an important was also an opportunity to rededicate together anniversary because it marks the goodness that to the further achievements that lie ahead. we aspire to as Americans. It's the 20th anniver- Because in Maryland, as the people gathered sary of the signing of Americans with Disabilities chanted along with their Governor, the goal is Act and with it the guarantee for more than 54 first and foremost to “move forward, not back.” million of our fellow citizens of basic freedoms -like independence, like equal access, and freedom of choice and inclusion.” Maryland Governor Martin O’Malley lead the crowd celebrating the 20th Anniversary of the ADA at Oriole Park in a chant of “We move forward, not back!” As Governor O’Malley motivated the crowd with the many ways that things in Maryland are “moving forward and not back”for people with disabilities, he highlighted DORS and its achievements: • “With a 7% increase over four years for DORS services, we move forward, not back!” • “We have been able to make investments that are allowing us now to serve nearly 11,000 Andrea Freedman accepts an Entrepreuers Business Marylanders with disabilities, and that's because Award at the ADA celebration from Maryland in Maryland we move -- say it with me -Governor Martin O’Mally and Baltimore City Mayor forward, not back! Doesn't that feel good?” Stephanie Rawlings-Blake 10
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LIVING A DREAM as a Musician: Jesse’s Story
By Mona Freedman RN Adored by our family, and engaged to be married to our daughter Andrea, Jesse is not only a friendly and considerate young man, he is also a great joy and ispiration to be around. Jesse’s life story closely relates to the meaning of his rock band’s name, Leftstronger. If you asked Jesse, he would explain it like this: “Because of the cerebral palsy on my right side, the left hand is stronger-thus ‘left stronger’ ”. He then would also explain the deeper meaning, which is, when you encounter a difficult life experience and you recover from it, you are then “left stronger” from that experience. Jesse feels that he is now ‘left stronger’ from his past life experiences of growing up with the feeling of isolation, neglect and the alcoholism of a parent at home and social isolation at school. Jesse is a very social person and struggled for years trying to fit in with his peers and meet friends. Even as an accomplished drummer in high school, the guys Jesse practiced with and formed bands with, never really included him in their outside activities. Jesse grew to become a very dark and introverted individual. There was no support at home and no outlet for Jesse to get his feelings out, except through music. He perfected his craft by playing drums for hours on end. He would sing louder and louder, higher and higher to block out his immediate problems and environment. Who would think that these coping skills would help him to become one of the best drummers in the area, a professional drum instructor and one of the best singer/songwriters many have ever heard, including important music industry professionals in NY and California! When Jesse came into Andrea’s and our lives, his hair was long and covering his face, head down, and he had one-word answers. He had very few life skills and could not even buy a bag of chips for himself or prepare a meal. He was even threatening to commit suicide. Andrea stuck with him and told the teachers at the Post Secondary School program that they attended 12
together that he was depressed and talking like that. How brave she was to step in! I asked my husband at the time, do we really want Andrea to be with someone like that? Andrea, who also has a mild developmental disability, saw something in Jesse that we just didn't see at the time. It didn't take long for our feelings to change and within a short time he came to live with us, when a couple of family incidents made it impossible for Jesse to live with his parents. Now he was gaining incredible social skills, life skills and blossoming into a happy and secure man. But there was still something else that seemed to hinder his learning on a day-to-day basis. His vision seemed to be worse than even Jesse had even realized because he was so used to living this way. I noticed that he appeared to trip too often, could not take stairs and bumped into people too often. This was making it more difficult for him to become independent. I made an appointment with the Wilmer Eye Institute at John Hopkins Hospital. It turned out that Jesse’s vision was well below the definition of legal blindness. He had no peripheral vision at all and in fact only has 12% vision in one eye and only 14% vision in the other. They even suggested that Jesse use a white cane in public! Jesse is a rock star and wants nothing to do with that! He has learned how to over compensate for his vision loss and does very well. He now receives vision services from DORS. Jesse is now 26 years old and very secure in his career and world. We adore him and he has a new and happy life with us as his new family. He is an incredible, successful musician with a band of his own and a job as a professional drum instructor. Isn't it so important to take an interest someone's life and show love and support? What a difference this has made! Jesse is whole now. He is putting all the pieces of his life together from years of damage and has grown into a wonderful secure young adult. His story is one of triumph. After several attempts at starting his own World of Possibilities
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Living My Dreams (Continued from pg. 17)
bands through the years, Leftstronger seems to be the one that is on the road to making it. Jesse and his band have played most of the clubs within the Baltimore Region. All the musicians in his band are great friends and in their 20's. They are all extremely professional, dedicated and reliable. The band is amazing with Jesse at the helm. Jesse's amazing song writing and 3+ octave vocal range and pitch are rarely heard in this area. Leftstronger released their debut full-length CD early in March 2010 entitled So Close, and all songs were written or co-written by Jesse Magee. Jesse's song Change the World is played as the theme song on the FOX 45 TV reality show, "Good Fellas of Baltimore" on Saturday Afternoons at 1pm. This song is so catchy that many think this tune help propel this series to national syndication. He also has a program he conducts called Rock-Able. This is an incredible and most worthwhile assembly program, please visit www.rock-able.com. www.caringcommunities.org
Rock-able allows students to gain a better understanding of people with developmental disabilities using a real rock performance by LEFTSTRONGER and a presentation by Jesse. Jesse's program is inspirational and has lasting results! Students may NEVER look at an individual with a disability in a negative way again! Jesse changes lives! He's that unforgettable! Jesse and his band perform in and around the Baltimore Region. They do many charity functions also. Please visit Jesse’s website at www.leftstronger.com. And come out to see a real show, not just a concert! Jesse at Rams Head Live
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Choosing The Right Contractor For Home Accessibility Remodeling and ADA Compliance Renovations
By John Martindale, www.brothersservices.com
Selecting a reliable home improvement contractor can be one of the most important decisions a homeowner makes. Couple that with finding a contractor that is knowledgeable about the unique requirements to accommodate wheelchair access and overall accessibility in a home, and consumers can be left with limited choices in remodeling companies. By following a few simple suggestions, you can find the right company to trust with the renovation of your home. When making a home accessible for individuals with disabilities, look for a contractor that fully understands the existing challenges to accessibility. Is it difficult to reach kitchen faucets, cabinets and appliances? Does the bathroom present safety concerns? Do doors swing the right way, and are the home’s doorways and halls wide enough to accommodate wheelchair access? The answers to these questions and others allow a contractor to develop a plan that specifically addresses the needs of individuals with disabilities or those seeking an “aging in place�lifestyle. A universal design process to retrofit a home for greater accessibility must take a broader focus on improving the quality of life for everyone in the home. While there is no doubt those with disabilities would prefer to live in their own home, the fact is traditional home design and architectural (Continued on page 15)
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Choosing The Right Contractor (Continued from pg. 14) the Better Business Bureau, and who have a
standards rarely consider the needs of those with disabilities. Any renovation plan presented by a contractor to address greater accessibility should account for the requirements of today, and plan for needs of tomorrow. Of course, retrofitting a home or commercial building for greater accessibility should not be confused with making a home ADA compliant. It’s not just a matter of meeting the minimum accessibility requirements or selecting the right products to use. Whether it’s a walk-in bathtub, adjustable kitchen countertops, or even simple grab bars, all of these products require installation by a contractor that is experienced in the specialized work of accessibility remodeling. Accessibility remodeling may be a specialty, but that doesn’t mean a contractor shouldn’t have the same qualifications and certifications as any other company performing construction services on a home. Seek companies that are licensed and insured, have an “A”rating from www.caringcommunities.org
track record of satisfied customers over many years of business. Finally, ask your contractor for information about payment options for a home remodeling project. There are various remodeling loans, financing tools, and often government grants that can assist in the financing of accessibility remodeling projects. For those with disabilities and limited mobility, living at home should provide the maximum independence possible. A home improvement contractor should understand this, and every part of the plan should be to ensure that goal is met. About The Author: John Martindale is CEO of Brothers Services Company, a company that specializes in construction solutions and remodeling for accessibility and independent living. Brothers Services is a proud corporate sponsor of Caring Communities. Visit BrothersServices.com/Accessibility for more information. 15
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IT COULD HAVE BEEN PERFECT
By Stephen L. Crowder a.k.a. Nick Danger One morning I went to the lake with friends to take my Sea Doos out for the day. That afternoon, as I sat in my beach chair on the shore of Crowley Lake, I could not help but think that I actually had a perfect life. I was the envy of everyone I knew. I had battled back from every type of adversity, including a lengthy drug addiction. After a lifetime of ups and downs, I had arrived. The next day, I traveled to Los Angeles, where, the night before my 20 year high school reunion, I was the victim of an unprovoked attack by the drunken host at a BBQ. I emerged a quadriplegic. My hopes and dreams were shattered! All of my belongings and my home in the mountains were sold. I moved to San Diego, where I would spend the next 2 1/2 years rehabbing. I never lost hope, however, because I knew that my mind was still intact. I could still think and write. I created a website, www.SurvivingParalysis.com , to help unite people with paralysis. Through it, I helped others and myself, and found happiness once more. 16
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MOVEMENT FOR LIFE !!
Daily Exercise for the Physically Compromised By Dr. Errol Gray, EX N’ FLEX International, Ottawa, ON Canada On going Scientific research continually provides studies regarding the benefits of passive/active exercise. CONSIDER THE ADVANTAGES AND CONVENIENCE of being able to set up your own exercise program at home. Range of motion exercise every day will stretch muscles, tendons and retain lubrication in the joints, all essential components to prevent atrophy’increase bone strength and provide Long Term Maintenance. Your personal passive/active exerciser allows you to exercise daily from your wheelchair or scooter; on the deck, by the window, watching television or reading. Transportability and small size in a machine make it ideal for taking anywhere for short outings or long trips. Passive/active exercisers provide the user with Long Term Body Maintenance through movewww.caringcommunities.org
ment therapy. This type of exercise is beneficial for individuals with a wide range of physical disabilities including Para and Quadriplegia, Multiple Sclerosis, Cerebral Palsy, Brain Trauma, Stroke, even Arthritis and Diabetes. Individuals have reported benefits such as increased circulation, flexibility, strength and endurance, better bowel and bladder control. Users find a reduction in spasm, spasticity, edema, stiffness, skin breakdown and pain. The ability to exercise anytime brings a sense of freedom and well being. A Range of Motion device can provide predictable patterned exercise for as long as you want, whenever you want. For additional information please visit:
www.exnflex.com • email: info@exnflex.com or call 1(888) 298-9922
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POSTSECONDARY EDUCATION:
Exploring Your Options Adapted From: www.mdtransition.org Attending a postsecondary institution – a fouryear college or university, a community college, or other postsecondary training program – presents new opportunities and challenges for every student. Pursuing postsecondary education allows students to broaden their social horizons while preparing academically for meaningful employment. Students with disabilities have a large array of options when it comes to choosing a postsecondary learning environment. The information and resources below allow students to explore their options, explain key differences between K-12 and postsecondary supports, and attempt to guide students and their families through the transition from high school to postsecondary education. The Maryland Higher Education Commission (MHEC) recently created a new website, Mdgo4it, for transitioning youth who are interested in attending college. The website provides information on preparing for college, the application process, paying for school, and life on campus. Going to College is another website designed for teens with disabilities and provides information about planning for college including selecting a college, financial aid, and picking a major. There is also a section on learning more about oneself in order to set goals, determine strengths, and develop an advocacy plan for communicating with faculty, advisors, and disability support staff. The HEATH Resource Center (HEATH), an online clearinghouse on postsecondary education for individuals with disabilities, has developed a module to answer students’ questions about educational and training options available after high school. This module, entitled Awareness of Postsecondary Options helps students prepare to make decisions about their life after high school, and provides information about the variety of (Continued on page 21)
............................................................................................. EDUCATION
Family Support for Families who have Children with Disabilities by Family Support Services, MSDE Family Support Services, in the Division of Special Education/Early Intervention Services at the Maryland State Department of Education is based on the strong philosophical foundation that reinforces parents as full partners in the Individualized Family Services Plan (IFSP) process, the Individualized Education Program (IEP) process, and as significant sources of support for one another. Family Support Services at the State and local level assist parents in their efforts to actively participate in the early intervention system and/or the special education system, and to engage in activities that promote family life in the community. With clear research that links family involvement to better developmental and educational outcomes for children, Family Support Services is an integral part of the entire education system (0-21) in Maryland. In each local
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jurisdiction, parent coordinators (parents of children with disabilities themselves) and professionals work together to provide family support services through three different program components–Family Support Network (FSN), Preschool Partners (PP) and Partners for Success (PFS). The Family Support Network component is for parents/families of children with disabilities (birth-3) who are participating in their local early intervention system. Many families of young children with disabilities benefit from family-to-family support and from a network of resources to help them access information pertinent to their child’s disability and family circumstance. In addition to the above resources, FSN Coordinators assist parents/ families in understanding the IFSP process. (Continued on page 20)
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EDUCATION ............................................................................................... Preschool Partners is the bridge between early intervention services and the preschool special education system. The goal of this family support component is to help create a seamless system of supports during the preschool years as children and families are experiencing many changes. Preschool Partners coordinators help families with other early childhood transitions, such as the transition from preschool to kindergarten, from kindergarten to first grade, and/or from child-
care programs to the public school system. Preschool Partners provide ongoing support to families of children 3 through 5, maintaining the connection with the local early intervention system, as well as fostering new connections among families, preschool programs, and community services. Partners for Success centers are a part of each local school system in Maryland and serve professionals and parents of all children
Local Parent Coordinators Updated 4/2/07
Jurisdiction
Allegany County Anne Arundel County Baltimore City Baltimore County Calvert County Caroline County Carroll County Cecil County Charles County Dorchester County Frederick County Garrett County Harford County Howard County Kent County Montgomery County Prince George’s County Queen Anne’s County Somerset County St. Mary’s County Talbot County Washington County Wicomico County Worcester County
Family Support Network
301-689-2407 410-222-6911 410-396-1666 410-887-2169 410-535-7387 410-479-4204 410-876-4437 410-996-5637 301-934-7456 410-221-0837 301-600-1617 301-616-8119 410-638-3823 410-313-7161 410-778-5708 240-777-4809 301-883-7428 410-827-4629 410-651-9413 301-272-0550 410-820-6940 301-766-8221 410-677-5250 410-632-5234
Preschool Partners
301-689-2407 410-222-3805 443-642-4223 410-887-5443 410-535-7387 410-479-4204 410-751-3955 410-996-5637 301-934-7456 410-221-0837 301-600-1617 301-616-8119 410-273-5599 410-313-7161 410-778-5708 301-962-3818 301-431-5675 410-827-4629 410-651-9413 301-863-4069 410-827-4629 301-766-8221 410-677-5250 410-632-5234
27) (Continued on page 21)
Partners for Success
301-689-2407 410-222-3805 443-642-4223 410-887-5443 410-535-7387 410-479-4204 410-751-3955 410-996-5637 301-934-7456 410-221-0837 240-236-8744 301-533-0240 410-273-5599 410-313-7161 410-778-5708 301-279-3100 301-431-5675 410-758-6393 410-651-9413 301-863-4069 410-827-4629 301-766-8221 410-677-5250 410-632-5234
Statewide Services: MD School for the Blind • 410-444-5000 ext. 489 • MD School for the Deaf • 410-480-4597
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World of Possibilities
............................................................................................. EDUCATION Partners for Success ... (Continued from pg. 20)
and youth with disabilities, ages 3 through 21. The primary goal of PFS centers is the provision of knowledge and the development of essential skills fundamental to parents and professionals working together as equal partners in the educational decision making process. Partners for Success coordinators seek to increase parental involvement in the special education decision making process through information and training (particularly with regard to the IEP process); provide information and resources about disabilities and community services; and assist families in resolving concerns by increasing collaborative relationships. Most local PFS centers have a resource library available to parents and professionals. The Statewide Family Support Services Coordinators can be reached by calling 1-855-414-5891. Local parent coordinators can be reached using the list on page 20.
@@@@@ @@@@@ Check out these websites www.mdtransition.org
www.k12.dc.us/dcps/servicesstudent/student12.html
www.pen.k12.va.us/VDOE/sped/transition
For the most comprehensive information in MD, DC and Virginia on transitioning students with disabilities into college and the world of work Community Colleges—Serving Students of ALL Abilities
Are you interested in a Community College experience of academics, independent living skills, specialized vocational/job training and personal interest skills, for transitioning youth and adults with disabilities who have exited high school? More and more of these specifically designed classes and programs are being developed. For information, contact Fran Nickey at Ph. 410-560-0822 or fnickey@comcast.net
www.caringcommunities.org
Postsecondary Education... (Continued from pg. 18)
options. It wraps up with an overview of the topics covered as well as additional resources. Other modules developed by HEATH include Community College which provides students with information on the education environment at community colleges; College Application Process with information on navigating the application process for students with disabilities; and Parents’ Guide to Transition that aims to increase parental knowledge and tools about their child’s postsecondary options. Think College has developed a Transition Checklist designed to give family members an easy to use list of topics that should be considered when discussing the transition from high school to college. This website also includes a database of postsecondary education programs for students with intellectual disabilities. Check out mdtransition.org for information on financial aid, understanding your rights and responsibilities and many additional resources. 21
NEW PERSPECTIVES ON GAINING JOB EXPERIENCE Career Tips for the Perfectly Able
By Jim Hasse. Find his blog Career Tips for the Perfectly Able, a regular feature at GettingHired.com. You can read more at www.gettinghired.com, the largest and most comprehensive on-line community for talented job seekers who happen to have disabilities. Gain work experience during high school or college. It is essential in competing effectively in today’s job market because it gives you an opportunity to hone the “soft”work skills every employer now seeks in a job candidate. That recommendation comes from Jennifer N. Kemp, Youth Policy Team Leader, Office of Disability Employment Policy, U.S. Department of Labor. “I’ve had a dozen jobs -- from fudge maker and baby sitter to editorial assistant,”says Kemp, who has cerebral palsy. “I’ve never really faced the situation where I couldn’t get a job when I wanted one,”she adds, looking back on her career of more than 20 years. Kemp was a featured speaker at the 25th Annual Careers Conference in Madison, WI, January 26, 2011. She’s showing today’s youth that the old “Catch 22”some individuals with a disability like to repeat (“How can I gain the required work experience for a job when no one will give me a chance to work?”) may still be comforting but not necessarily relevant. Kemp got her first “real”job in 1988 -- two years before the ADA. She credits her soft skills as her key to successfully landing her jobs. She’s been a Senior Policy Advisor for the U.S. Department of Labor and Special Assistant to the Chairman of the President’s Committee on Employment of People with Disabilities. She (Continued on page 23)
.
WORK ................................................................................................ MATTERS New Perspectives on ... (Continued from pg. 22) began her career in the disability field through a Workforce Recruitment Program internship (wrp.gov) at the U.S. Department of Defense. I was surprised to hear Kemp give this Office of Disability Employment Policy recommendation to an audience consisting mostly of career facilitators, coaches and counselors within a secondary or post-secondary educational setting: “All youth, including those with disabilities, today need two or more jobs before graduating from high school.” That’s a challenge. The U.S. Department of Labor (December 2010 Bureau of Labor Statistics) shows employment among 16- to 19-year-olds is 25 percent among non-disabled individuals and 11 percent among individuals with a disability. In the 20- to 24-year-old age group, the gap widens even more: Employment is 60 percents for non-disabled individuals but only 32 percent for individuals with a disability. Why is employment during high school so critical? Kemp says a young person needs work experience to build these five critical “soft”skills: 1. Communication - How to express personal feelings and needs effectively one-to-one and in a group. 2. Attitude - How to be assertive instead of aggressive. 3. Teamwork - How to value each team member and the role each member plays. 4. Networking - How to find common interests as well as accept and offer support. 5. Problem solving - How to framework personal experience with a situation-taskaction-result (STAR) format. “You get to know what you’re good at by gaining work experience,”says Kemp. “It develops your enthusiasm and self-esteem.” If you’re beyond high school or college, are unemployed and lack job experience, consider volunteering your time at your targeted company or organization to gain the experience you need or applying for an internship as an adult. Adult internships are more common today (Continued on page 26)
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WORK MATTERS ................................................................................................
Employed Individuals with Disabilities Program
By : Maryland Department of Disabilities, www.mdod.state.md.us Who is Eligible? Marylanders with disabilities Overview A day care teacher, customer service represen- who meet all of the following criteria: • Have a disability that meets Social Security’s tative, peer counselor, college professor, Naval medical standards. Academy employee, retail associate and a sub• Are 18-64 years old. stance abuse rehab counselor are just some of • Are employed or self-employed. the Marylanders with disabilities who have enrolled in the Maryland Employed Individuals • Are under the income limit – as high as $66,348 a year if single, or as high as $89,268 with Disabilities (EID) program. a year if married. EID is a work incentive program that enables • Meet resource (asset) limit – $10,000. Marylanders with disabilities to return to the Examples of assets and resources are bank workforce without losing their critical Medicaid accounts, stocks, investments, some types of health coverage, including some services (such life insurance, some retirement accounts, and as attendant care and psychiatric rehabilitasome property. Assets that DO NOT COUNT tion) that many people with disabilities need, toward the resource limit include the but other health insurance plans rarely cover. individual’s primary residence, personal EID is targeted toward working adults with vehicles and certain retirement accounts disabilities whose income and resources would (401(k), 403(b), pension and Keogh). otherwise disqualify them for public medical EID Success Story insurance such as Medicaid. Kim and Dianne VanderWeyden had been The EID program provides full fee-for-service Medicaid coverage and wrap-around services for renting a small, inexpensive apartment for many years, but dreamed of buying their own those with other health insurance or Medicare. home. They had investigated the Maryland Medical Assistance under the EID program: Homeownership for Individuals with Disabilities • Covers most medical services for individuals Program, but found that even at the very low who have no other health insurance, interest rate the program offered, the mortgage including some services that people with payment would be substantially more than disabilities need, but other health insurance their current rent, an increase they could not rarely covers. afford. Attending an EID workshop offered by • Saves individuals with Medicare $1,000 the Maryland Department of Disabilities, they $12,000 a year by covering Medicare learned that Kim was eligible for the program. premiums, deductibles and co-insurance. Their savings on Medicare costs, over $1,000 a • Supplements private insurance, paying for month, enabled the VanderWeydens to qualify services that other insurance does not cover for the mortgage and in June 2008 they moved such as personal care, some psychiatric into their new home. rehabilitation services, and transportation How to Apply to and from services covered by Medical Assistance. If you think you might be eligible and want to apply, contact the EID Outreach Project. You Premiums are based on income and may be may contact the program, or have someone call $0, $25, $40 or $55 per month. The monthly for you. A staff member will take your applicapremium cost is offset by the savings people tion over the phone, then mail it to you to sign realize in extended health coverage. The and return with copies of certain documents: coverage can be renewed every six months. (Continued on page 25)
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World of Possibilities
WORK ................................................................................................ MATTERS EID Program... (Continued from pg. 24) •Photo ID (such as driver’s license or age of majority card) for you and your spouse (if you’re married) showing you live in Maryland • Proof of earnings from work for you (and your spouse) • Proof of all other income for you (and your spouse) • Proof of all resources (assets) for you (and your spouse) • Proof of marriage (if married). If you don’t receive Social Security Disability benefits or Medicare, you may also need proof of your U. S. citizenship or immigration status. Just mail the signed application and the other documents back to us. The Division of Eligibility Waiver Services (DEWS), which decides whether you are eligible, will almost certainly request additional documents after receiving your application.
EID tips for advocates provides information for advocates, professionals and family members who are helping a person with a disability apply for EID.
EID Resources EID Outreach Project Maryland Department of Disabilities 443-514-5034 1-800-637-4113 eid@mdod.state.md.us www.mdeid.org Division of Eligibility Waiver Services (DEWS) Maryland Department of Health and Mental Hygiene/Medical Assistance 410-767-7090 Maryland Disability Law Center 410-727-6352 www.mdlclaw.org 1-888-838-1776
Local Employment Service Providers for People with Disabilities (MD, VA, DC) Office Workforce Investment Council
DisabilityInfo.gov
609 H St. NE, Suite 521, Washington, DC 202-698-5826 • dcwic.dc.gov/dcwic
www.DisabilityInfo.gov is a website that has employment tips specific to job seekers with disabilities.
Rehabilitation Services Administration
Maryland Department of Disabilities
810 First Street, NE, 9th Floor, Washington, DC 202-442-8400, or 202-442-8613/8563 (TTY/TDD) rsa.dhs.dc.gov/rsa
Voice / TTY: 410-767-3660 • Voice / TTY: 800-637-4113 mdod@mdod.state.md.us • www.mdod.maryland.gov
Mayor's Committee on Persons with Disabilities
Voice / TTY: 800-526-7234 jan@jan.wvu.edu • www.jan.wvu.edu
Job Accommodation Network (JAN)
Phone: 202-442-8673
Maryland Department of Labor
VA Department of Rehabilitative Services
Licensing, and Regulation (DLLR) 410-230-6001 • www.dllr.state.md.us
8004 Franklin Farms Drive, Richmond, VA 804-662-7000 Office Voice • 800-464-9950 Toll Free TTY www.vadrs.org/officelist.asp
MD State Dept. of Education Division of Rehabilitation Services (DORS) Voice: 410-554-9385 • 888-554-0334 TTY • 410-554-9411 dors@dors.state.md.us • www.dors.state.md.us
America’s Service Locator (to locate your One-Stop Career Center) Voice: 877-348-0502 • TTY: (877) 348-0501 Website: www.servicelocator.org
www.caringcommunities.org
Maryland Disability WorkFORCE 301-662-0099 • TTY: 301-662-4853 info@mdworkforcepromise.org • www.mdworkforcepromise.org
National Center on Workforce and Disability/Adult (NCWD/Adult) Voice/TTY: 888-886-9898 contact@onestops.info • www.onestops.info
U.S. Department of Labor (DOL) Office of Disability Employment Policy Voice: 866-633-7365 • TTY: 877-889-5627 •www.dol.gov/odep
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WORK MATTERS ................................................................................................
SWEET SUCCESS!
Developmental disability doesn’t deter young entrepreneur from opening a huge store, The Shoppes at Carrolltown, Carrolltown Center, Eldersburg, MD Andrea Freedman, 25 years old with mild disabilities opened her 2500 sq. ft. storefront next to the Kmart in Eldersburg. The Shoppes at Carrolltown, featuring Andies Candies and Collectibles opened on Oct. 15th and has been packed with buyers since then! Located next to the Kmat at the Carrolltown Center, the business grew out of her interest selling chocolates, figurines and bobbleheads to friends and family. Similar to many successful entrepreneurs, she wanted to combine a passionate interest with a money-making venture. Her new store contains 2500 square feet of elightful and unique items for everyone: NFL, Bobble Heads, Candy, Jewelry, Glassware, County Crafts, Glitzy Glass, Incredible Inedibles, Dangling Dollies, Madame Alexander Dolls, gift baskets and much more. Andies Candies is owned by Andrea Freedman of Eldersburg, MD, a 25 year old resident and entre-
preneur. She has been in the candy business as for years and ironically began at the Carrolltown Center when she was 17 in a kiosk, inside the mall. She then moved Andies Candies several times to Ripples Florist, a bridal store in Eldersburg and Bellisimos Restaurant. She then moved to Main Street in Historic Ellicott City But as the economy turned downward she found it difficult to make it in a tourist area. Andies Candies is now back in Carroll County as part of her new store, The Shoppes at Carrolltown, featuring Andies Candies and Collectibles with 14 other vendors! She sells for all of them and the store has a variety of wonderful and unique items. She has won many awards for her efforts and is a role model for other entrepreuers with disabilities. Please come by and visit her, you will amazed at the appearance of the store and her inventory. Visit her website at www.andiescandies.com
New Perspectives on Gaining Job Experience (Continued from pg. 23) than in the past when internships were considered only for high school or college students. Soft skills are needed, according to Kemp, to launch any kind of job marketing campaign. According to Quintessential Careers, on average, one of 12 informational interviews results in a job, while it can take 300 to 1,500 resumes to get a job offer, she says. Kemp maintains the gap in soft skills she often sees between youth with a disability and youth with no disability can be closed not just through work experience but also through family, community and school relationships. She has a five-year-old, for example, who recently learned how to shake hands effectively from an uncle. And, if flipping burgers as a way to gain work experience is not realistic for you, Kemp recommends framing what you have accomplished from the perspective of soft skill development. 26
For instance, if you’ve developed your own solution for taking notes during high school or college, position it as an example of your problem-solving ability. “If you have a network of personal assistants, show how that experience has taught you how to manage people,”Kemp points out. “If you’re on top of things (in terms of the job requirements and the soft skills employers seek) and how living with a disability has prepared you for the job, it’s hard to turn you down.” In short, the experience of dealing effectively with a disability can be an asset for you when looking for a job, if you frame it right in terms of how it has helped you develop the soft skills that are essential for success in today’s job market. Copyright © 2011. Hasse Communication Counseling. All rights reserved. www.jimhasse.com or for more information also please visit www.perfectlyable.com World of Possibilities
AN AQUATIC PRESCRIPTION BY MARCIA CALLAN AQUATIC SPECIALIST and USA SWIMMING CLUB COACH FAIRPORT SWIMMING, FAIRPORT, N.Y.
The story begins with an 88 year old WW 2 Marine Veteran, who resides in Augusta, Ga. Her name is Agnes Caviston and served in San Diego when Pearl Harbor hit, manning the switch board for Generals. She has lived a full life of giving, raising four children and some grandchildren. Agnes is in fragile health and has her health care through the Veterans Administration (VA) and Medicare. Her son is her full time caregiver and has given up his career to care for her. In doing so, they live just above the poverty level. Agnes happens to be my mother and is royalty to me and my family. After a visit the end of August 2010 and seeing my mother bedridden, medicated and with no quality of life, I said to my brother, we need to get her in the water immediately. With our swimming background we had a complete understanding of the physiological and biological effects vertical immersion can have on the body. We made a commitment to get my mother in the water within 30 days, so now we need a pool. The follow through was going to be massive. The process began by looking online for a soft hot tub to get her started. In the meantime, I was doing follow up calls to help my brother, as he had his hands full with Mom’s daily care. One such call was to the Wounded Warrior Division of the Marine Corps. In the conversation, there was a recall of an email that had been received about a therapy prototype pool that was designed for wounded warriors coming back from war. The premise of the (Continued on page 28)
FREE TIME .................................................................................................
AN AQUATIC PRESCRIPTION (Continued from pg. 27) pool was to provide privacy, personal rehab and to be home with family ASAP. They didn’t respond because they had no need or formulary for such a device. I asked if she still had the information, and 2 days later she sent it to me. I immediately made a phone call to Peter Hold the innovator and designer of “The Vertical Pool”. After a 45 minute conversation, explaining my mother’s history, the VA, and her current fragile condition, and passion for my mother’s health, he was donating/loaning the pool to my mother. He drove it all the way from Cortez, Colorado to Augusta, Georgia and installed it. After 3 months of Aquatic Therapy, my mother has been taken off BP meds that she has been on for years. When we started the process of bringing Mom back to life, she was on 19 different medications (over 30 pills per day) putting her in a bedridden, vegetative intoxicated state. The VA said no to the pool because of a urinary catheter and colostomy as a result of 2 surgeries, 28
her family said yes to the pool and they would design her comeback program. Mom is now off four meds and four more medication doses reduced and 1 as needed basis. We continue the long journey that goes day to day. Some days mom is with it and great, other days she seems to be in a far away land that can’t be reached. It isn’t over until it’s over, and she’s making a come back. She was interviewed in February by General Jan Hicks for the WW 2 Historical Society to reside in the Library of Congress. For more information on “The Vertical Pool’contact Peter Hold holdpg@yahoo.com or contact me marci_callan@fairport.monroe.edu
World of Possibilities
................................................................................................. FREE TIME
WHAT IS MUSIC THERAPY? Music therapy is an interpersonal process in which the therapist uses music and all of its facets-physical, emotional, mental, social, aesthetic, and spiritual-to help clients to improve or maintain their health. In some instances, the client's needs are addressed directly through music; in others they are addressed through the relationships that develop between the client and therapist. With whom is music therapy used? Music therapy is used with individuals of all ages and with a variety of conditions, including: psychiatric disorders, medical problems, physical handicaps, sensory impairments, developmental disabilities, substance abuse, communication disorders, interpersonal problems, and aging. It is also used to: improve learning, build self-esteem, reduce stress, support physical exercise, and facilitate a host of other health-related activities. Where do music therapist work? Music therapists work in general hospitals, psychiatric facilities, schools, prisons, community centers, training institutes, private practices, and universities. What determines how the music will be used? Music therapy sessions are designed with several factors in mind. First and foremost, the therapist has to select the types of music experience to be used according to the goals of therapy and the needs of the client. Each of the music experiences described above requires something different from the client, and has a potentially different effect. For example, improvising and composing are both creative, but one is done extemporaneously and the other is not. Moreover, the improviser produces his/her own music, while the composer relies upon a performer. Continuing in this comparison, creating one's own music is quite different from re-creating or performing music already www.caringcommunities.org
composed by someone else. A performer has to faithfully convey the musical ideas of another person, while an improviser or composer deals only with his or her own ideas. Finally, listening is quite different from the other types of music experience because it involves taking in and receiving the music, without being actively involved in its creation or production. The listener is active in a different way from the improviser, composer, and performer. What organizations represent music therapy? There are two organizations in the USA representing the profession and professionals of music therapy: The American Music Therapy Association Silver Spring MD 301-589-3300 www.musictherapy.org The Certification Board for Music Therapist Downingtown, PA 800-765-CBMT (2268) or 610-269-8900 www.cbmt.org 29
ASSISTIVE TECHNOLOGY LOAN PROGRAM
Helps Individuals with Disabilities Live More Independently
www.mdod.maryland.gov Karenna and Ken Jones saw their lives change forever when their two-year-old son, Kenny, fell into a swimming pool and nearly drowned. Kenny spent a year in hospitals in Baltimore – 130 miles from his Salisbury, MD, home – and his parents watched their finances crumble as they missed work to stay by his side. The couple wanted to bring their son home but needed to build an accessible addition on their house to accommodate Kenny and the roundthe-clock nurses he required. Because of the damage to their credit, no lender would consider giving them financing, except for the Assistive Technology Loan Program (ATLP), offered through the Maryland Department of Disabilities (MDOD), Technology Assistance Program. Their loan was approved. They built the addition and Kenny was able to return home. Several years later, the Jones family applied for and received another loan to buy a van with a wheelchair lift. Having access to these loans made it possible for this family to independently care for and support their son. After successfully repaying their first home modification loan, they applied for a second loan to modify their home again, as Kenny turned 10 and needed additional modifications to make his life easier. (Continued on page 31)
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TRENDS
Assistive Technology Loan Program (Continued from pg. 30)
Eight years ago, April Garlitz had an accident that left her with a spinal cord injury and limited mobility. At the time, she was a high school student preparing for graduation and the life ahead of her. But April wasn't going to let this stop her from accomplishing everything she had planned. With a fierce determination, she used braces and a walker to walk across her high school graduation stage. She also learned to drive an adapted vehicle. Six months ago, April and her family applied for a low-interest loan through the Assistive Technology Loan Program (ATLP) to finance the cost of an adapted vehicle when no other option seemed possible. "The van helps me a lot. I can get my power chair in it and go to the doctors, the store or wherever," said April, now 26 years old, of her new, adapted 2008 Dodge Grand Caravan. We couldn't get a loan through any other bank." For April, the ATLP loan and the new van have made access to her community far easier, "I do www.caringcommunities.org
stuff on my own. I'm completely independent." The Assistive Technology Loan Program helps Maryland residents with disabilities and their families qualify for low-interest loans to buy equipment that will help them live, work, and learn more independently. Applicants can borrow from $500 to $50,000 in order to purchase assistive technology (AT) that helps a person with a disability live more independently and productively. The AT could include: wheelchairs, motorized scooters, Braille equipment, scanners, hearing and vision aids, telecommunications devices, augmentative communication systems, computers and adaptive peripherals, building modifications for accessibility and motor vehicles and vehicle modifications. To learn more about the Assistive Technology Loan Program, visit www.mdod.maryland.gov or call 410-554-9233, 1-800-832-4827 toll free, or 1-866-881-7488 (TTY - toll free). 31
ASK THE LAWYER
TRENDS ................................................................................................
The Patient Protection and Affordable Care Act
Nationally recognized attorney/advocate Joseph L. Romano, answers questions on the effects of the New Healthcare Reform Law for patients with serious illnesses and injuries Why is the New Healthcare Reform Law impor- that a patient is custodial they will no longer tant legislation for people with disabilities? cover any additional therapies or treatments. Meeting the healthcare needs of a patient with Often times this occurs before the patient is given a serious illness or injury requires extensive an ample opportunity to show that they can coordination of both private insurance benefits make rehabilitation gains. Whenever a patient is and governmental benefits. The New Healthcare denied benefits based on a custodial care denial, Reform Law has provided greater access to the families should seek the assistance of an advocate benefits and services that patients need. or an attorney to challenge the denial. What are the most important changes to Is there any help for patients who are uninprivate insurance benefits under this law? sured and have a pre-existing condition? I consider the most important change the ban Each state is required to have an interim, on lifetime limits of coverage for private health affordable health insurance plan for patients insurance contracts. Most insurers, prior to this who lack health insurance and have a legislation, had a 1 million dollar lifetime cap on pre-existing condition. benefits. Families, who have a loved one who Are there any changes to the health insurhas suffered a serious injury or illness know that ance appeal process under this law? a million dollars is often inadequate coverage. My experience with the health insurance appeal The second most important change is that system is that it is a biased system to protect the private health insurers can no longer drop cov- fiduciary interest of the health insurer and fails to erage for a person after a serious illness or give due consideration to the opinion of the injury. We purchase health insurance in order to patient’s treating physician. Under the new act, an external appeals system will be implemented, have coverage when it is most needed and to have your insurer drop you when this event and the request for services will be decided on occurs is an unfair practice. the potential benefit a service or treatment holds for the patient. I have always advocated for this Other important changes which have been type of decision making process. made through this legislation are: • Insurance companies cannot deny coverage Home & Community Based Services (Waivers) for children with pre-existing conditions have proven to be a key benefit for people with disabilities. Will these be expanded • Unmarried adult children can remain on under the New Healthcare Reform Law? their parent’s policy until the age of 26 I agree that Waiver services have proven to be an • Establishes an internet site that an insured essential benefit for patients and their families can view or download their Master Insurance Contract (the key document which and under the new law each state will be offered additional funding to expand their Medicaid servidentifies the patient’s coverage). ices to include attendant care as a benefit under Does the new law prevent insurers from their state’s Medical Assistance Plan. Under our denying benefits? present system, waivers are limited benefits and No, unfortunately the New Healthcare Reform when funding is exhausted, patients are put on a Law will not prevent an insurer from denying waiting list to receive those services. If attendant benefits. One of .the most common reasons for care is added to a state’s Medical Assistance plan, denial of benefits that patients encounter are it would make these services an entitlement. Custodial Care denials. When an insurer decides (Continued on page 34)
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TRENDS ................................................................................................
STANDARDS FOR ACCESSIBLE DESIGN
By Liz Water, Aquatic Access, Inc., www.aquaticaccess.com hotels and motels, fitness and recreational The Americans with Disabilities Act (ADA) is a sports clubs, country clubs, high schools and civil rights law that prohibits discrimination on universities, water parks, hospitals and health the basis of disability. On September 15, 2010, care facilities. Regulations may also apply to the ADA Guidelines finalized on July 23, 2004 private residential facilities, such as homeown(ADAAG 2004) became the 2010 Standards for Accessible Design and were signed into law. It is ers, apartment and condo associations if these now required that both public and private enti- facilities are open to the general public. ties that serve the public must now comply with The 2010 Standards for Accessible Design these standards as specified in Title II (Public provide specification of certain elements in the Entities) and Title III (Public Accommodations design of new and renovated facilities to and Commercial Entities) by March 15, 2012. ensure that individuals with disabilities are The law includes shooting ranges, golf courses, generally able to access exercise equipment, miniature golf courses, amusement rides, swimming pools and spas and use a variety of fishing piers and boat docks as well as exercise features of the facility. facilities, saunas, steam rooms, swimming There are some misconceptions about exercise pools, wading pools and spas. equipment and its availability to people with disThe 2010 Standards for Accessible Design cover abilities. The new law stipulates that equipment both public and private facilities including pools is accessible to reach, that is with an accessible (Continued on page 35) operated by public park and recreation districts,
ASK THE LAWYER (Continued from pg. 32) How will the Insurance Exchanges work? Consumers who cannot obtain affordable health insurance will be able to purchase their health care coverage through an Exchange that will be set up in every state. Depending on income and resources, individuals may qualify for premium assistance with their health insurance through the government. Each policy must cover the following essential services: • Ambulatory Patient Services • Emergency Services • Hospitalization • Maternity and Newborn Care • Prescription Drug Coverage • Rehabilitative & Habilitative Services/Devices • Prevention and Wellness Services • Chronic Disease Management • Pediatric Services Including Vision & Oral Care What advice do you have for patients & their families about healthcare benefits & services? My best advice for patients and their families is to become familiar with all aspects of their health insurance contract and to seek assistance from an advocate to help coordinate their 34
private benefits with available governmental benefits and services. In order to be certain that the long term needs of a patient are met, it is more important than ever to investigate “What Happened?” to cause the injury or illness. The benefits that can potentially be obtained from a third party settlement are essential for providing the long term care for a patient. Patients need certain services and supports such as vans with modifications, home modifications, stem cell treatments, hyperbaric oxygen therapy, and respite care. By using novel long term funding approaches during the litigation process, I have been successful in obtaining these extracontractual benefits, which are not covered by private insurance, Medical Assistance or Medicare. Having access to these services improves the quality of life for the injured or ill individual. To receive a free copy of Mr. Romano’s new book, “Legal Rights of the Seriously Ill and Injured: A Family Guide” contact his office at 1-800-331-4134. Or for more information please visit: www.josephromanolaw.com
World of Possibilities
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TRENDS
Standards for Accessible Design (Continued from pg. 34) route to the equipment and space adjacent to the equipment where a person can transfer from a wheelchair to the equipment to exercise. Section 206.2.13 require an accessible route to serve accessible exercise machines and equipment. Section 236 of the 2010 standards requires that at least one of each type of exercise machines meet clear floor space requirements which are specified in Section 1004. The do not require that the exercise equipment itself be modified, but that there be clear floor space positioned for transfer or for use by an individual seated in a wheelchair. In Sections 241 and 612 it is stipulated that turning space and accessible benches be provided. The path doors follow in opening and closing cannot encroach of the clear space required for transfer to benches. If a temporary bench is allowed to encroach on this space, it must be removable. If saunas or steam rooms are provided in clusters at a facility, at least one in each cluster must meet the accessibility standards. www.caringcommunities.org
Sections 242 and 1009 specify the new requirements for Swimming Pools, Wading Pools and Spas. Since 2004, Accessibility Guidelines for Recreational Facilities have recommended that pools be made accessible for everyone, but remained recommendations, unenforceable and largely optional for pool managers. While many conscientious pool managers have complied willingly with these guidelines, they are no longer optional, but now are legally required. Pools that are larger than 300 linear feet in perimeter now must have two means of access. Many access products on the market exceed the minimum standards stipulated in the guidelines; many claim to meet the standards and do not. Before investing in any access device, it is imperative to check the standards yourself rather than trusting a salesman to understand completely the requirements. For more information on this, it is published at ADA.gov. or you can call the ADA at 800-514-0301. 35
Courage. Strength. Determination. Celebrated and Embraced by the National Sports Center for the Disabled
www.nscd.org Each year, thousands of children and adults with disabilities come to the NSCD to learn freedom, confidence and a sense of accomplishment. They take to the ski slopes, mountain trails, golf links and playing fields to experience the thrill and adventure of outdoor recreation and sports. With specially trained staff and its own adaptive equipment lab, the NSCD accommodates individuals with almost any mental or physical challenge. Over the past 41 years, the National Sports Center for the Disabled (NSCD) has enjoyed extraordinary growth and achievement. Our progress has been marked by steady determination and a passion for providing high-quality, affordable recreational and competitive programming to individuals with disabilities. Since 1970, the NSCD has continued to make remarkable strides. The NSCD was born on the ski slopes, and now offers over 23,000 lessons annually for different summer and winter sports to individuals with almost any disability. We are rafting, hiking, and mountain biking in the summer; skiing and snowshoeing in the winter; and conducting sports clinics in soccer, baseball, and football in Denver and across the country; just to name a few. From a child with cerebral palsy who rides a horse for the first time to the teenager with a quadruple amputation whose goal is to snowboard in the half-pipe, we exist to help individuals achieve their goals and shatter society’s perceptions about disabilities. (Continued on page 37)
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HEALTH
Courage. Strength. ... (Continued from pg. 36) Our course, none of this would be possible without the help of over 800 trained volunteers who are extremely dedicated to the work of the NSCD. The average volunteer stays with any giving non-profit organization for 2.5 years. The average NSCD volunteer has been with the organization for just over 7 years. Volunteers assist with both summer and winter programs as well as special events and fundraising efforts. People who take part in NSCD programs practice courage, strength and determination, not only on the ski slopes, on the bike path or on the playing field – but in everyday life. We are grateful for our community, and thank our many thousands of supporters for helping us encourage our participants to seek out new adventures and explore their abilities. With the extraordinary support we receive, we are able to touch people’s lives in profound and lasting ways. www.caringcommunities.org
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Don’t Let the Toothache Make Your Decision: Complete Dental Care for All HEALTH
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by Harvey Levy, DMD, MAGD, LLSR: www.DrHLevyAssoc.com For the millions of people who avoid going to always be treated while asleep. The operating the dentist for routine care, “fear and finances” room is always successful in cases of extreme are the most typical reasons given. When anxiety or agitation. people moan that dental care is expensive, I say Access to care is sometimes an obstacle. ADA that neglect is far more expensive. When they architectural codes ensure that patients can confess that they are fearful, I suggest comalways get into the office building. Some offices monly used means of controlling that fear. With have dental chairs that move to the side with our current resources and technology, no one hovercraft technology, so the patient can remain should be denied routine dental care, whether in the comfort of their own wheelchair or gurney. the patient is disabled or not. Don’t let today’s Dental x-rays are now easier than ever before. neglect become tomorrow’s emergency: prevent Digital imaging enables immediate viewing and it by visiting the dentist regularly. instant retakes if needed. Hand-held portable Not all anxious people are special-needs patients, 5 lb. x-ray units now allow radiographs to be but all special-needs patients are anxious. The taken anywhere, be it in a dental office, a anxiety may due to irrational fears, panic attacks, nursing home, a private home, an institution, severe gagging, infant fears, Alzheimers, autism, or a hospital. and physical or mental challenges. Medicines can Cost of treatment may be a concern, but not help in most of these cases. always a barrier. Financial arrangements can There are many sedation medicines that can often be made using payment plans or creative reduce mild anxiety. They can come in the form financing options. of pills (Valium®, Halcion®, Ativan®), liquids If you don’t go in for routine car maintenance, (Chloral Hydrate®, Atarax® or Versed®), or laugh- you’re far more likely to have a major problem ing gas (nitrous oxide). down the road. Whatever the reason to avoid To deal with greater anxiety, IV (intravenous) the dentist, it pays off to prevent today’s neglect sedatives can make the patient comfortable and from becoming tomorrow’s crisis. Visit your forgetful of the experience. dentist regularly. Beyond that, there is complete general anesthe- For comments, contact Dr. Harvey Levy at sia, wherein the patient is totally asleep while 301 663-8300, DrHLevy@gmail.com or all the work – sometimes a lot of it! -- is comvisit www.DrHLevyAssoc.com pleted. This may be performed in a dental office, or in the operating room of a surgical center or hospital. Patients with certain medical conditions are unable to sit still in the dentist’s chair. Most can be successfully and comfortably be treated under sedation, as described above. Other patients may also need Velcro wraps and mouth props, which help reduce hand and body movements and help keep the mouth open. Many dentists have these available in their offices. If sedation, wraps and props fail, the patient can 38
World of Possibilities
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HEALTH
Pressure Sores and Chronic Wounds: Winning the Battle the Natural Way by Sharon Gardner, sharongardner@usa.net I remember the overwhelming urge to escape into a cloud of denial. How many times during my 45 years as a paraplegic had my life been devastated by a pressure sore! But I knew I couldn’t ignore it. Uncontrolled pressure ulcers are one of the leading causes of death among spinal cord injured persons. My doctor referred me to physical therapy for wound care. The wound measured 1.1 by 1.7 centimeters. The anticipated month of healing turned into four months as we rotated through all the well known dressings and techniques. Each dressing worked well for a few days, then the wound would regress - two steps forward, three steps backwards. My wound quadrupled to 4 by 6 centimeters and so I was discouraged. Incredulously, www.caringcommunities.org
someone on a local talk show referenced a topical herbal spray that rapidly heals diabetic ulcers and pressure sores. I was skeptical but kept listening, straining for any clue that might facilitate my healing. By using modern technology to reengineer natural remedies of yesterday, an MD had formulated an innovative, all-natural treatment that accelerated healing. Clinical studies showed the cost was a tiny fraction of traditional therapies. Dubiously, I bought a bottle of Miracle Mist Plus. Within two days, progress was obvious. Twelve weeks later my sore had totally closed and I had resumed active life. With cost containment so critical right now, perhaps it’s time to investigate proven safe, effective alternative treatments. I found mine at . . . www.healthylifeandtimes.com. 39
HEALTH
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Everyone Needs to Consider Preparedness Plans Under the Emergency Preparedness project, the Maryland Department of Disabilities has worked diligently to help people with disabilities prepare in advance for natural or man-made disasters or emergencies by being able to handle their basic needs for a minimum of three days without formal emergency assistance. Individuals, provider agencies, employers and emergency personnel have been encouraged to be prepared for all major issues related to disasters. Fire and police departments may be overwhelmed in a major emergency; therefore, everyone needs to be as self-sufficient as possible so as not to put undue strain on first responders and emergency resources in the early stages of disaster recovery. In advance of any emergency, individuals should plan how to communicate with family and friends, gather supplies (see box) and work with family, friends, provider agencies
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and/or employers to know what to do in an emergency situation. It is an individual’s responsibility to assess how much assistance he or she will need. For further information regarding preparing for an emergency, please contact the Maryland Department of Disabilities at 410-767-3660 v/tty or 1-800-637-4113 v/tty.
Preparing for DISASTER Supplies for 3 Days: • Food • Water • Medication • Radio
• Flashlight • Batteries • Your Support Network
SEE www.mdod.state.md.us for more information under Statewide Resources World of Possibilities
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SOMETHING
FOR EVERYONE! World of Possibilities disAbilities, Healthy Aging and Independent Living Expo.
Caring Communities, a small yet powerful, non-profit 501(c)3 organization based in Eldersburg, Maryland, began in February of 1997 when a group of parents of children who had disabilities met to address the need for comprehensive respite care services and the lack of trained respite care providers in Maryland. In the last decade, Caring Communities has grown into a well-known and widely respected organization offering disability-related activities, publications and events for thousands within the entire disabilities community in Maryland and beyond. We are an impassioned organization, with a staff whole-heartedly dedicated to seeing that all people, no matter what their ability may have access to all that life has to offer. Caring Communities is hosting its 8th Annual World of Possibilities: Disabilities, Healthy Aging and Independent Living Expo. This world-class event is being held on May 6th, 2011 and is conveniently located at the Maryland State Fairgrounds in Timonium, Maryland. This Expo is the biggest and best event of its kind in the region and is rapidly becoming the area's major forum for disability and senior-related resources. Thousands are expected to attend. You do not want to miss out! This year Caring Communities is proud to partner with Brothers Service Company www.brotherservices.com, a leader in home construction and remodeling, to present its biggest and best event to date. Brothers Service Company has recently connected with Caring Communities to introduce their new
AROUND
.............................................................................................. OUR OFFICE Retrofit Division, serving the disabilities community and offering accessibility remodeling: construction solutions and remodeling for accessibility and independent living. Brothers Service Company is the major sponsor of the World of Possibilities Expo and will host an interactive accessible housing exhibit at the event. Caring Communities is proud and excited to have Brothers Services as a sponsor! World of Possibilities Expo has something for everyone and all members within the disabilities and senior community, children with disabilities and their families, caregivers and service providers, veterans and baby-boomers etc., are strongly encouraged to be there! World of Possibilities Expo will provide an opportunity for the community to enhance their knowledge and to explore the latest and greatest products, services, technology and available resources. You will find on the main floor of the expo: • An exciting third year Employ-ABLE Disabilities Career Fair, sponsored by Baltimore County Commission on Disabilities and the Mayor's Commission on Disabilities/funded by the Maryland Department of Disabilities. Employ-ABLE Career Fair is dedicated to finding companies who are hiring persons with disabilities as well as disability professionals (OTs, PTs, educators, etc.). Don't forget to bring your resume to the event!
www.caringcommunities.org
• Dan Keplinger - Subject and writer of the 1999 Oscar Award winning documentary King Gimp. Dan Keplinger will show a segment of his movie with a question and answer period to follow. • Free wheelchair rental and repair! • Free parking for all attendants at the Fairgrounds! To learn more, about us please visit: http://expo.caringcommunities.org.
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BOOKS & RESOURCES Autism Tomorrow
By Karen Simmons and Bill Davis Available in Paperback List Price: $29.95 What Is Autism Tomorrow? Do You Have a Child with Autism? You’re Holding the Roadmap to Your Child’s Future! Do you ever wonder if your child... • Will marry and have kids? • Can live on their own? • Will be gainfully employed? • Is going to be safe in your absence? • Has the right tools for his success? Everything that you need to know about: Estate planning, independent living, nutrition, fitness, employment, safety, sexuality, puberty, dating, bullying, reading, social skills and communication. Autism rates exponentially increased since the mid-eighties, and thousands of families have a child with autism who are reaching adulthood without a comprehensive resource to help them make that transition. Autism Tomorrow addresses these questions and many more. Autism Tomorrow gives you the comprehensive resource and life guide you need to help your child make a smooth transition into adulthood. Anna's Journey, By Anna Renault List Price: $19.95 Released: February 26, 2011 How many lives does one person get? Have you ever heard someone say the Lord moves in mysterious ways; or, that the Lord arranges for me to be in the right place at the right time? How many times have you heard someone say that cats have nine lives? How many people 44
can say they’ve faced death or near-death situations and survived nine or more times? Being friends with people like Ken Rochon (Perfect Networker) and Patsy Anderson (Well Connected), I must say I can answer those first two questions with a resounding YES! The Lord in my opinion has done amazing things in my life, especially in introducing people to me and then making them influential in my life at just the right time! As for the next two questions, I never really thought about the number of times I have been in a near-death situation. That is true at least until my friends Ken and Patsy suggested I write a book about my amazing life. Amazing? Me? Once I sat down and made a brief list of my trials and tribulations – and yes, near-death situations, it does seem to be pretty amazing compared to most people’s lives. And so, I made the tough decision of figuring out what to write about and how much to include in each chapter and what would be of interest to those who hopefully buy the book. Would you or someone you know be interested in reading the story of someone who saw two teens killed by a lighting strike? Would it be amazing to read about that same girl surviving a car accident where the driver was killed and probably should have killed her as well? Doesn’t sound too exciting? What if this same person is diagnosed with Lupus, has a heart “episode”at 49, and has journeyed through cancer eight times? Many people have said they are astonished at what I’ve experienced. They are also astounded to hear my cancer story. More than a few people have said they are amazed that I am still alive and looking so well -- and so, I’ve decided to be a very active Perfect Networker team member by writing my story. I hope my story provides interesting reading for all, but also that it has a positive impact on the lives of those who have traveled a rough road as I have done, as well as for those who love and World of Possibilities
care for them. With Much Love, Anna Renault WEB LINKS: www.annarenault.com causesandheroes.com/annasjourney.aspx
Dangerous Encounters – Avoiding Perilous Situations with Autism
Bill Davis and Wendy Goldband Schunick Available in Paperback List Price: $26.95 Released: May 15, 2002 Jessica Kingsley Publishers, London Why Safety Training is Needed Excerpt from Dangerous Encounters; Avoiding Perilous Situations with Autism A Streetwise Guide for All Emergency Responders, Retailers, and Parents. One early hot summer evening my son, Chris, and I were sitting on the sofa watching TV with the front door left ajar to get a breeze. When I answered the telephone I turned and noticed he was no longer sitting with me. So I said to the person on the phone, “Gee, my son’s not on the sofa. Let me just look for him.” Chris had taken off! My heart sank when I looked down the dark street and didn’t see him. But then, I looked the other way and just caught him turning the corner. He was running on his toes wearing nothing but a diaper! Thank god, he turned left instead of right because right went toward the highway. He seemed to be going a route that we’d taken before. He was very route-oriented so I said to myself, “Don’t panic. He’s going to follow the way we normally go.” I sprinted down the block, leaped over a parked car, and found him. There he was, just sitting there very happy. “Hi, Chris.” No reaction. He just smiled as I took him back to the house. In a split second he had run out the door and down the street with no concern for anything! What if I hadn’t found him? Surely, the police would have questioned my competence as a www.caringcommunities.org
parent; and I’m the most concerned parent in the world! I’m the one who always yells at everyone else to watch him more carefully. But what kind of parent could I be, the officer would wonder, with my son two blocks away in his diaper at night? It was a rude awakening. I knew we had to do something fast to ensure Chris’ safety. He wasn’t even considered a significant runner, but we could not take the risk that he’d dash out of the house again. A lot of these kids take off any chance they get. You open the door, BANG! They’re gone. They see a space. They’re gone. It doesn’t even matter if they’re dressed. They just like to run. It is not unusual to find kids with autism miles away playing in front of restaurants or sitting in a gully unable to communicate. They have absolutely no concept of danger. My wife, Jae and I were also talking about our hopes for Chris when the happy thought of his independence was quickly interrupted. “Wait a minute. What if he’s out on his own and something happens? We have to introduce him to the police and get him fingerprinted right away!” But somehow that didn’t seem like enough. What about all the other children with autism running off and not being able to explain who they are and where they live? What happens if a person with autism creates a public disturbance? How would a police officer deal with him? If emergency responders are not aware of autistic behaviors they won’t recognize a child as having autism. Instead they think he is mentally ill, on drugs, or just antagonistic. How would ambulance and hospital personnel know how to check and treat for injuries? How would a firefighter rescue a child with autism who is hidden away in the corner of a house unaware of danger? The more I thought about safety issues, the clearer the solution became. My local police precinct and other emergency workers needed to be trained about autism, and I would be the one to do it.
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PLANNING FOR THE FUTURE
By The Arc of Frederick County, www.arcfc.org. Bob and Cindy, a couple in their early 30’s, just received the diagnosis that their 2-year-old son has a developmental disability. They are dealing with all of the emotions involved. Right now, their focus is on finding the right educational program for their son, learning about modifications needed for their home, and locating support groups to help them cope with the many challenges they face. They have not forgotten, however, that they need to plan for the future of their child when they can no longer care for him. Danicia is the single mother of 17-year-old Rayquan, who has a severe developmental disability. He will soon be leaving the school he has attended for the last 14 years. They can expect numerous changes in their lives. Danicia realizes that her son will no longer be considered a minor child, and she has many questions about how to assure that Rayquan will receive the many services he will require. Martha is a widow of advancing years. Her 54year-old daughter has lived with her all of her life. Martha realizes that she may soon be facing the end of her own life. She has many fears and questions about her daughter’s future. She is seeking help to plan for the quality of life she wants for her daughter after she is gone. Each family faces a unique situation. Even so, they all face the need to plan for the future of their children. Although it is difficult to consider, there will come a time when parents will no longer be able to care for their child with a disability. Advance planning can bring peace of mind, allowing parents to focus on the present without worrying about the future. GETTING STARTED The greatest obstacle for many parents is in planning for the future and not knowing how and where to start. After a conversation with a (Continued on Page 47)
AGENCY
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Planning for the Future ... (Continued from Page 46)
support coordinator at The Arc of Frederick County, Danicia realized that a good place to start is to create a vision of what she would like for the child’s adult life to be. This would include many details, such as living arrangements, recreational pursuits, holidays, and health considerations. It is easier to create a plan once you have an idea of what is required. BENEFITS Next, determine the public benefits the child is receiving or may receive in the future. While benefits can help an individual achieve an independent life, many have firm restrictions about income and assets the recipient can have. For example, Martha knows that her daughter will lose Supplemental Security Income (SSI) if she has more than $2000 in countable assets. The same is true for Medical Assistance, also known as Medicaid or MA. Her daughter’s medical expenses are high, and she will need MA. Therefore, it becomes very important to proactively plan so that a person www.caringcommunities.org
can maintain benefits and still lead a good quality of life. WHO CAN HELP? In summary, four documents can help parents plan for the future: • a will • a trust • a letter of intent • an advance medical directive Should you do these alone? Of course not. Who can help? An attorney can help with trusts and wills. A financial planner can help with accumulating funds to pay for the future. Friends, family, religious leaders, doctors, and others who have close contact with your child can help with the letter of intent. The Arc can also provide help in locating resources and to get a template for a letter of intent, a list of attorneys familiar with special needs trusts and wills, or other information related to this and other issues facing parents of a child with a developmental disability, please visit www.arcfc.org, or call at 301-663-0909. 47
Accessible Transportation TRAVEL
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Getting Here
WASHINGTON METROPOLITAN AREA TRANSIT AUTHORITY Metro is Accessible Project The Metro is Accessible Project provides information about bus and rail accessibility features and services to people with disabilities as well as the public at-large. Free Metro system orientations, videos, brochures and other resources are also available to assist people with disabilities. For more information visit our web site. Call: 202-962-1558 TTY: 202-962-2033 Online: wmata.com Reduced Fare Program for People with Disabilities Applications are available from the Metro Office of ADA Programs, 600 Fifth Street, NW, Washington, D.C. 20001 or by calling the numbers listed below. Applications may also be obtained at most Maryland Motor Vehicle Administration offices, transit stores and regional libraries. Metro Disability ID cards are issued at Metro headquarters. If you are 65 years or older you need to apply for the Metro Senior ID card, available at local libraries, Metro Headquarters and Metro sales offices. Call: 202-962-1555 TTY: 202-962-2033 Online: wmata.com Metrorail Operating Area: Washington metropolitan area Accessibility: For more information visit our web site, see Accessibility. Reduced fares: Please visit our web site, see Accessibility. Call: 202-637-7000 TTY: 202-638-3780 Online: MetroOpensDoors.com Metrobus Operating Area: Washington metropolitan area 48
To There
Accessibility: For more information visit our web site, see Maps & Stations. Reduced fares: Visit our web site, see Accessibility under Fares & Farecards. Eligibility: No application necessary Reservations: None Call: 202-637-7000 TTY: 202-638-3780 Online: MetroOpensDoors.com MetroAccess Service Type: Curb-to-curb paratransit service. MetroAccess provides shared ride transportation from 5:30am to midnight. Some late night service is available on weekends until 3:00am. Operating Area: Washington, D.C., MD, VA. Accessibility: Vehicles are accessible. Eligibility: Please visit our web site, see Accessibility under MetroAccess. Reservations: Customers must call the MetroAccess reservation office to schedule a ride. MetroAccess does not provide same day service. Online: wmata.com/Metroaccess Call: 301-562-5360 TTY: 301-588-7535
DISTRICT OF COLUMBIA Call and Ride Service Type: Taxicab Trip purpose: Any Operating area: District of Columbia Reduced fares: Fees are determined on a sliding scale depending on income. Eligibility: District of Columbia senior citizens (60 years of age or older). Call: 202-635-3970 Email: info@wehts.org Online: wehts.org DC Circulator Service Type: Bus Operating Area: District of Columbia Accessibility: Vehicles are accessible Reduced fares: For more information visit our web site. World of Possibilities
................................................................................................. Trip purpose: Any Eligibility: None Reservations: None Call: 202-962-1423 Online: dccirculator.com/home_page
MARYLAND/BALTIMORE Maryland Transit Administration (MTA) Operating Area: Central Maryland to Washington, D.C.
MARC Service Type: Rail Trip Purpose: Any Operating Area: Service on 3 lines from Washington to eight Maryland counties and West Virginia. Weekday service only. Accessibility: All trains are accessible. Many stations are accessible. Eligibility: None Reservations: None Call: 1-800-325-RAIL TTY: 410-539-3497 Online: mtamaryland.com MTA Metro and Light Rail Service Type: Rail (Subway and light rail) Operating Area: Baltimore City, Baltimore and Anne Arundel counties Accessibility: See web site. Reduced Fares: For more information visit our web site. Eligibility: No application necessary Reservations: None Call: 1-866-RIDE-MTA TTY: 410-539-3497 Online: mtamaryland.com www.caringcommunities.org
TRAVEL
BUS Operating Area: Baltimore City, Baltimore and Anne Arundel Counties Accessibility: All buses are equipped with wheelchair lifts and/or kneeling capability. Designated priority seats in the front of each bus. For more information visit our web site. Reduced Fares: For more information visit our web site.
Eligibility: No application necessary Reservations: None Call: 1-866-RIDE-MTA TTY: 410-539-3497 Online: mtamaryland.com Mobility/Paratransit Service Type: Specialized, curb-to-curb paratransit service for people with disabilities who are unable to ride accessible fixed-route public transportation, including lift-equipped buses. Operating Area: For more information visit our web site. Reduced Fares: $1.85 one-way Trip Purpose: Any Eligibility: Applications are available at MTA’s Certification Office, 6 Saint Paul Street, Baltimore, MD 21202-1614. For more information visit our web site. Reservations: Yes Call: 410-727-3535 TTY: 410-333-3624 Online: mtamaryland.com
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DIRECTORY OF SERVICES AARP Maryland 200 St. Paul Place, Suite 2510 Baltimore, MD 1-866-542-8163 www.aarp.org/md Dedicated to enhancing quality of life for all as we age, AARP leads the positive social change for Marylanders age 50+ through information, advocacy and service. Access Lifts & Service 218 Old Padonia Rd. Baltimore, MD 410-683-2393 or 1-866-543-8488 www.LiftUup.com (see our display ad, page 16) Your source for all your accessibility solutions! Service oriented company providing sales, installation and service of a variety of reliable accessibility lifts and elevators for residential and commercial use for a better quality of life! Advanced Medical Concepts (AMC) 9-H Gwynns Mill Ct. Owings Mills, MD 410-902-7900 or 1-800-860-3185 www.amcbaltimore.com (see our display ad, page 16) Advanced Medical Concepts is dedicated to providing custom seating and positioning for clients in need of mobility solutions. Home evaluations available. American Discount Medical 459 Main St. Ste. 101-417 Trussville, AL 1-800-877-9100 Americandiscountmed.com (see our display ad, page 37) Never pay retail on medical equipment or supplies. Discounts given on the products that meet your requirements. We work with over 500 companies to satisfy your needs. Call for a quotation. Americle Healthcare, Inc. 2151 Priest Bridge Dr. Ste. 28 Crofton, MD 410-721-0958 or 1-866-733-2282 www.americlehc.com (see our display ad, page 3) Americle Healthcare, Inc. is a local Medical supply and equipment company. What makes us Different? We work harder than other companies. Why? WE CARE! Period. The Shoppes at Carrolltown 6400 Ridge Rd., Carrolltown Center Eldersburg, MD 410-549-4747
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www.andiescandies.com (see our display ad, page 23) Gift Superstore with an oasis of treasures, crafts and gifts galore! Aquatic Access, Inc. 1921 Production Drive Louisville, KY 1-800-325-5438 or 502-425-5817 www.aquaticaccess.com Aquatic Access makes safe, independent, eco-friendly pool access possible for everyone with water-powered pool lifts that comply fully with the 2010 Standards for Accessible Design. Bikes @ Vienna 128-A Church St., NW Vienna, VA 703-938-8900 www.bikesatvienna.com (see our display ad, page 29) We offer specialty bikes and trikes for riders of all abilities. Brothers Services Company 3 Locations •111 Hanover Pike Hampstead, MD • 9400 Snowden River Parkway Columbia, MD • 716 B York Road Towson, MD 410-BROTHER (410-276-8437) www.brothersservices.com (see our display ads, inside front cover and page 15) Construction solutions and remodeling for accessibility and independent living. Camp Fairelee Manor 22242 Bayshore Rd. Chestertown, MD 410-778-0566 www.de.easterseals.com (see our display ad, page 5) Camp Fairlee is a fun filled, week long, traditional summer camp for children and adults with ALL disabilities. Two weeks just for children with Autism. Coventry Health Care The Diamond Plan 6310 Hillside Court, Suite 100 Columbia, MD 1-866-533-5154 or 1-800-284-2510 www.diamondplan.net (see our display ad, page 11) The Diamond Plan is currently available in the City of Baltimore, Baltimore County, and Harford County to Maryland residents
who are newly eligible HealthChoice members and those existing members eligible for the annual right to change. Quality health care that you and your family deserve! DateAble, Inc. 301-888-1177 www.dateable.org (see our display ad, page 5) DateAble is a Nationwide dating service for people with disabilities. The greater membership ranges from the DC area to the New York area. Joining fee is $125. Dr. Harvey Levy & Associates, PC 198 Thomas Johnson Dr, Ste 108 Frederick, MD 301- 663-8300 www.drhlevyassoc.com Visit DrHLevyAssoc.com to discover Dr. Harvey Levy and Associates’ 37 years of comprehensive and compasionate dental office and hospital services for all disabled and special-needs patients. Epiphany Design 1-888-410-2243 or 416-410-2243 www.epiphanydesign.ca (see our display ad, page 13) Unique outwear designs for wheelchair and scooter users - adults or children. Including ponchos, leggings, shawls, capes, jackets, and pants. The owner/designer is also quadriplegic. Ex N’ Flex International 1-888-298-9922 www.exnflex.com (see our display ad, page 17) Ex N’Flex International: Manufacturer/ Direct Sales, 19 years. Continuous passive/active electrotherapeutic devices providing Range of Motion Therapy to physically compromised children and adults. Live independently, longer. Infinity Nursing Services, Inc. 18549 Brooke Rd. Sandy Spring, MD 301-260-1208 and 301-260-1209 240-645-3643 after hours www.infinitynursinginc.com (see our display ad, page 40) Infinity Nursing is committed to exceptional nursing services with excellence and grace across the state of Maryland.
World of Possibilities
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DIRECTORY
................................................................................................ OF SERVICES Law Office of Joseph Romano 2 West Lafayette St., Suite 200 Norristown, PA 1-800-331-4134 www.josephromanolaw.com (see our display ad, page 33) Attorney Joseph Romano advocates for benefits for children with serious medical needs. He assists with health insurance appeals, government benefits and other resources. Mac´s Team www.macsteam.org (see our display ad, page 7) Mac’s Team – Helping to raise awareness about MLD (Metachromatic Leukodystrophy) For more information please visit us at macsteam.org or mldfoundation.org. or email us at info@macsteam.org. Maryland Dept. of Disabilities 217 E. Redwood St., Ste. 1300 Baltimore, MD 1-800-637-4113 or 410-767-3660 www.mdod.state.md.us (see our display ad, page 31) The Maryland Department of Disabilities, working with all State agencies, advocates for the rights and interests of people with disabilities and oversees the delivery and coordination of government services and programs for people with disabilities. Maryland Developmental Disabilities Council 217 E. Redwood St., Ste 1300 Baltimore, MD 410-767-3670 or 1-800-305-6441 www.md-council.org (see our display ad, page 23) The MDDC is a public policy organization that advocates for the inclusion of people with developmental disabilities in all facets of community life. MDDC educates policymakers, advocates for inclusive policies and funds innovative projects that improve supports and services. Maryland Division of Rehabilitation Services (DORS) 2301 Argonne Drive Baltimore, MD 410-554-9442 or 1-888-554-0334 www.dors.state.md.us (see our display ad, page 35) DORS mission: Provide leadership and support in promoting the employment, economic self-sufficiency and independence of individuals with disabilities. DORS
www.caringcommunities.org
programs and services promote this mission. Maryland Orthotics and Prosthetics Co., Inc. 3 Locations • 8517 Loch Raven Blvd. Baltimore, MD 410-665-8200 • 15 E. Main St., Ste. 116 Westminster, MD 410-876-6584 • 2014 S. Tollgate Rd., Ste. 105 Bel Air, MD 410-569-9202 www.mdop.com (see our display ad, page 41) We have a 29 year history of providing the highest level of state-of- art orthotic and prosthetic care to the Baltimore and surrounding communities. Maryland Rx Card 1211 Cathedral St. Baltimore, MD 443-794-4075 or 1-800-223-2146 www.marylandrxcard.com (see our ad, Inside Back Cover) The Maryland Rx Card is a Free statewide discount prescription assistance program open to all residents. The program was launched to help uninsured and underinsured residents afford their prescriptions. Miracle Mist Plus Healthy Life and Times 8127 Mesa Drive, Ste. B-206 Austin, TX 1-800-217-6677 www.WoundCareSpray.com (see our display ad, page 39) Miracle Mist Plus - All-natural pressure sore treatment preferred by patients and professionals for chronic or diabetic wounds, burns, incisions, rashes, boils, shingles. Soothing. Effective. Guaranteed. MLD Foundation 1-800-617-8387 or 503-656-4808 www.mldfoundation.org (see our display ad, page 9) MLD worldwide support & information. MSDE – Division of Special Education 200 West Baltimore St. Baltimore, MD 1-800-535-0182 www.msde.state.md.us (see our display ad, page 19) Family Support Services in the Division of Special Education/Early Intervention
Services assists families at the state and local levels in their efforts to actively participate in the early intervention system and/or the special education system in order to achieve more positive developmental and education outcomes for children with special needs. Ms. Wheelchair Maryland, Inc. 301-888-1177 www.ms-wheelchair-md.com (see our display ad, page 5) Ms. Wheelchair Maryland, an annual pageant held for women in wheelchairs. Contestants need knowledge of disability issues, public speaking and being a positive role model. Our next Gala is the first weekend in November. Accepting applications now. National Sports Center for the Disabled 303-633-5802 www.nscd.org (see our display ad, page 37) The National Sports Center for the Disabled (NSCD) provides therapeutic sports and recreational opportunities for adults and children with disabilities. The Cerebral Palsy Group 301 888-1177 www.TheCPGroup.org (see our display ad, page 5) The Cerebral Palsy Group provides vital networking for their Associates, information about research, health, social and daily life. We have two major conferences each year. The Hearing & Speech Agency 5900 Metro Drive Baltimore, MD 410-318-6780 or 410-318-6780(tty) www.hasa.org (see our display ad, page 21) The Hearing and Speech Agency serving Maryland since 1926. Services include audiology, speech-language therapy, sign language interpreting and special education services. The Vertical Pool 928-300-9800 www.theverticalpool.com (see our display ad, page 28 ) Rent/Lease/Purchase: The Vertical Pool for at-home aquatic exercise, therapy, rehab. Accommodates Hoyer and Smart Lifts. Modular design allows installation anywhere.
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Maryland Rx Card Frequently Asked Questions
What is the Maryland Rx Card? Maryland Rx Card is a FREE statewide discount prescription assistance program. The program was launched to help uninsured and underinsured residents afford their prescriptions. Who is eligible to participate in the Maryland Rx Card program? Every resident of Maryland is eligible to receive a FREE prescription drug card. How do Maryland residents get a Maryland Rx Card? Maryland residents can print a card by visiting the website www.MarylandRxCard.com. The Maryland State Medical Society will also be setting up distribution sites across the state where residents can obtain a free card. Anyone not able to print, or otherwise obtain a card, can simply visit any Safeway or Giant in Maryland and ask the pharmacist to have the prescription processed through the Maryland Rx Card Program. What makes Maryland Rx Card different from other prescription programs? • No enrollment forms • No restrictions to participation • No eligibility or income requirements or limitations • No waiting periods • No age restrictions • No exclusions • Includes pre-existing conditions • No claim forms to file • No annual or lifetime limits • Includes discounts on brand and generic medications • Open formulary so that all medications are eligible for discounts • Confidentiality: No personal information will be sold, shared, or distributed. Can this program be used by people who have insurance with prescription benefits? This program was launched to help the uninsured people of Maryland afford their prescriptions. However, people with insurance can also use Maryland Rx Card to get a discount on medications not covered by their insurance (non-covered drugs).
What type of discounts can you expect when you use this card? Average savings are roughly 30% with savings on some medications as high as 75%+. What prescriptions are discounted with this program? The program has an “OPEN FORMULARY” which means that all medications are eligible for a discount through this program. What are the highlights of the Maryland Rx Card program? The program has an “OPEN FORMULARY” which means that all medications are eligible for a discount through this program. PROGRAM HIGHLIGHTS: • The cards are FREE to all Maryland residents. • There are no enrollment forms, no restrictions, no age or income requirements, no waiting periods, no eligibility required, no exclusions, covers pre-existing conditions, no claim forms to file, no annual or lifetime limits, includes discounts on brand and generic medications, open formulary so that all medications are eligible for discounts. • This program has a "LOWEST PRICE" feature that provides cardholders the lowest plan price on prescriptions at participating pharmacies (Medication Pricing/Discounts are calculated on the plans lowest negotiated contract price and the pharmacy’s “usual and customary” price). • This program can be used by people who have Health Savings Accounts (HSAs), High Deductible Plans, and Medicare Part D. • The program can be used as a standalone benefit or to get discounts on non-covered drugs. • All Maryland residents are eligible to participate in this program. To obtain a FREE card you can access www.MarylandRxCard.com 24 hours a day and download as many cards as you need. If you do not have access to a computer, you can walk into ANY Safeway or Giant to receive your discount through the Maryland Rx Card program.