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JUL-AUG 2018

AmeriDisability AMERICA’S PUBLICATION FOR THE DISABILITY COMMUNITY

Sarah Foley Ms. Wheelchair Hawaii 2018

EDUCATION


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AmeriDisability July/August 2018


In This Issue

AmeriDisability

Inclusion - Education

Publisher & Editor - Florida Sheila Mahan Mailing Address AmeriDisability Services P.O. Box 620728, Oviedo, FL 32762 Contact info@AmeriDisabilityServices.com Phone: 1-888-405-3860 Fax: 1-888-308-8024 Contributors Nancy DeVault, Haley Brittingham, Ellen Callahan, Emily McDeed

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Learning Disabilities Association of America Celebrates 55 Trailblazing Years

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Experts Weigh In: Lessons on Self-Advocacy & Personalized Learning

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Picture This…Lesson Pix Offers Visual Classroom and In-Home Support Materials

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Former Florida Senator Continues to Impact Education for Students with Unique Abilities

In the Spotlight

Advertising & Subscription info@AmeriDisabilityServices.com Ad Material Submission Deadline August 5th for the September/October Issue

Cover photo courtesy of Sarah Foley. Photograpy by Jess Johnson Photography

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Museum of disAbility History: An Inclusive Space of the Past, Present and Future

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A Brighter Future for People with Color Blindness

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Sarah Foley: Ms. Wheelchair Hawaii 2018

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The Beautiful Artistic Vision of a Blind Artist

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American Ninja Warrior Contestant Jimmy Choi Inspires Others with Parkinson’s Disease

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Mental Health Association Helps Families Find Support

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Meet Isabella Matos: An Adaptive Athlete Paving the Way on the Right Track

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UCF’s Adaptive and Inclusive Recreation Program

www.ada.gov

Around Town www.AmeriDisabilityOnline.com 46

DISCLAIMER: WE ENDEAVOR TO KEEP THE INFORMATION IN THIS MAGAZINE UP TO DATE AND ACCURATE; HOWEVER, WE MAKE NO REPRESENTATIONS, GUARANTEES OR WARRANTIES, EXPRESSED OR IMPLIED, ABOUT THE COMPLETENESS, ACCURACY, OR SUITABILITY WITH RESPECT TO THE INFORMATION, PRODUCTS, SERVICES OR PROFESSIONALS CONTAINED HEREIN. THE INFORMATION PROVIDED IN THIS MAGAZINE IS NOT INTENDED TO AND DOES NOT CONSTITUTE LEGAL FINANCIAL OR MEDICAL ADVICE, NOR IS ANYTHING SUBMITTED TO THIS MAGAZINE TREATED AS CONFIDENTIAL. YOUR USE OF CONTENT IN THIS MAGAZINE IS AT YOUR OWN RISK. THE CONTRIBUTORS, ADVERTISERS AND ALL OTHER LISTINGS CONTAINED HEREIN DO NOT IN ANY WAY CONSTITUTE A REFERRAL OR ENDORSEMENT BY AMERIDISABILITY, AMERIDISABILITY SERVICES, AMERIDISABILITY SERVICES MAGAZINE, AMERIDISABILITYSERVICESMAG.COM OR AMERIDISABILITYSERVICES.COM. COPYRIGHT 2017 AMERIDISABILITY SERVICES. NO PART OF THIS MAGAZINE MAY BE REPRODUCED WITHOUT WRITTEN PERMISSION FROM THE PUBLISHER.

Local, state and national events, conferences, expos and more

Educational Resources 48

Financial Aid and Scholarship Opportunities

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Inclusion

Learning Disabilities Association of America Celebrates 55 Trailblazing Years By Nancy DeVault In 1963, an assembly of motivated parents hosted a conference to present professionals and anyone impacted by learning disabilities with the need to address learning disabilities specific legislation, theories, diagnostic procedures, educational practices, research and training models. Soon thereafter, the Learning Disabilities Association of America (LDA) was founded. With the group’s participation, in 1969, legislation passed to offer a working definition of learning disabilities within federal law. This achievement was significant for the LDA, whose mission is to create opportunities for success for all individuals affected by learning disabilities and to reduce the incidence of learning disabilities among future generations. Today, the organization continues to host its innovative annual conference which now draws upwards of 3,000 participants, serving parents, educators, professionals and adults with learning disabilities. Carolyn Phillips first attended the Learning Disabilities Association Conference as a college student. “I had been diagnosed with dyslexia and dysgraphia, and I felt lost and overwhelmed,” Carolyn recalls. The experience changed and shaped her life. Twenty-eight years later, she’s nationally recognized for her work in the field of assistive technology and disabilities thanks to her role as Director and Principal Investigator of Tools for Life, Georgia’s Assistive Technology (AT) Act Program at Georgia Tech | AMAC. “LDA understands that learning disabilities can be both a struggle as well as a strength! People with learning disabilities absolutely think differently. That is a gift in a world that needs people to think differently, creatively and be true problem solvers,” says Carolyn, who’s become a conference presenter. “LDA supports and celebrates people with learning disabilities so we can accomplish our educational, workplace and independent living goals.” Empowering All Individuals “LDA is constantly in motion trying to preserve the rights of individuals with learning disabilities, as well as educating the public on why this is important,” says LDA’s President Beth McGaw. LDA defines learning disabilities as neurologically-based processing problems which includes seven disorders: dyslexia, dysgraphia, dyscalculia, auditory processing, language processing 6

disorder, nonverbal learning and visual perceptual/visual motor deficit. McGaw says each may interfere with the acquisition and use of one or more of the following: oral language (e.g. listening, speaking, understanding); reading (e.g. decoding, phonetics knowledge, word recognition, comprehension); written language (e.g. spelling, written expression and writing fluency); and mathematics (e.g. computation, problem solving, number sense and math fact fluency, spatial sense and verbal mediation of math concepts). Learning disabilities are life-long, says McGaw, and, thus, LDA’s effort addresses one’s lifespan and those who serve them. “Children with learning disabilities grow up to be adults with learning disabilities. So, it is hard to target just one audience without also serving another as well and the professionals who service them,” she says. The LDA maintains an Adult Topics Committee which, among other tasks, helps to answer questions submitted via the website. Plus, in an effort to support adults with learning disabilities, the organization has advocated for workplace and employment issues, testing and accommodations for high school equivalency exams (HSSE) and driver’s license testing; and hosts regular webinars. Teacher training is another pressing issue. “With more of our learning disabled students being placed in the general education classroom, it is more important than ever to make sure that both the general education and special education teachers understand not only how to recognize there is a problem but also how to utilize strategies in the classroom to help the student be successful,” McGaw explains. Unexpected Focus Some may be surprised to know that the LDA is invested in addressing toxic chemicals; Maureen Swanson, Director of LDA's Healthy Children Project, says it’s a necessity. “The science is now clear and definitive that toxic chemical exposures, especially to the developing fetus and young children, can contribute to learning and developmental disabilities,” she says, adding, “The National Academies of Science, the American Academy of Pediatrics and the American Congress of Obstetricians and Gynecologists have all stated that toxic chemicals,

AmeriDisability July/August 2018


interacting with genetics and other factors, can harm brain development, resulting in problems with learning, behavior and attention.” Swanson shared with AmeriDisability Services that, in 2016, an alliance of scientists, health experts and children's health advocates published a consensus statement in a peer-reviewed journal on toxic chemicals contributing to learning and developmental disorders to provide a foundation for action to prevent exposures. “We can't change our genes, but we can advocate to get toxic chemicals out of consumer products, food, water and air and soil to protect healthy brain development for all children,” she proclaims. Benefits of Membership While the LDA does offer some free online resources, paid members receive added benefits, such as local and state support systems, a community forum, advocacy programs, newsletters, discounts to conferences and more. McGaw believes the fact that LDA is a trusted organization is most invaluable. “When parents are concerned and wake up at 3 am in the morning worrying about their children, they often search the internet for information to help their child. They can land upon just about anything which may or may not be accurate,” she explains. The LDA does not receive federal or state funding and, thus, memberships and donations are what steer the organization’s resources, education and advocacy in an effort to support persons with learning disabilities at school, at work, in relationships and in the community.

“I became a member of LDA because the students in my classroom needed more individualized attention and LDA provided the resources and support to help me help my students. I often share what I learn with colleagues.” Ernie, classroom teacher “My membership in LDA means that I have access to the laws that protect me as an adult with learning disabilities helping me be an advocate for myself. It also provides the types of accommodations that I might receive to help me succeed in the classroom and in the workplace.” - Jodi, an adult with a disability “As a pediatrician, I often see parents who are unsure of where to turn after their child is diagnosed with a learning disability. I refer them to LDA to help them start on their journey.” – Dr. Susan Smith, professional Get Involved The 56th Annual International Learning Disabilities Association Conference will be held on February 18-21, 2019 at the Omni Fort Worth in Fort Worth, Texas. The organization hopes to engage teachers/assistants (of both special and general education), school administrators, counselors/social workers, parents of children with disabilities, professionals (researchers, medical/mental health experts) and adults with learning disabilities and/or attention deficit hyperactivity disorder. With this wideranging audience, the conference is set to offer an array of topics aimed to impact all. For more information, visit ldaamerica.org.

Here’s what members shared: “I became a member of LDA because my son was struggling in school and I was able to get the resources I needed from LDA to share with my son’s teachers and to help at home. It also gave me the peace of mind that I am not alone.” - Beth, parent of child with a disability AmeriDisability July/August 2018

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Inclusion

Experts Weigh In: Lessons on Self-Advocacy & Personalized Learning For the past year, we have been exploring how selfadvocacy skills and self-determination play a role in personalized learning. Self-advocacy skills allow students to advocate and communicate their rights and needs. Having self-advocacy skills is one thing that can lead to self-determination: an individual being empowered to actively make choices about their education and their life. For students with disabilities, there are substantial benefits to developing these essential skills and capacities. For example, research shows that even though students with disabilities may be less likely to act with selfdetermination, there are interventions that can help students develop these capacities and benefit from them at school, in the workplace and in their personal lives. We recently brought together a panel of experts to discuss the importance of self-advocacy skills and selfdetermination in personalized learning. Some of the questions we grappled with included why we don’t see these skills at the forefront of new education reform efforts like personalized learning and what can we do about it. Here’s what the experts said: 1. We must overcome biases and assumptions about what students with disabilities can do. Despite what we know about students with disabilities and their incredible potential, some professionals still operate under the misconception that students with disabilities cannot learn or accomplish as much as their peers without disabilities. As a result, students with disabilities are not always empowered to make active choices about their learning and lives. Every reform effort must begin with conversations at the school or district level about what educators believe students are capable of. Do you believe all kids can learn? If the answer to that is “yes,” then your initiative must reflect that belief in how it is designed and implemented.

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with disabilities who may not find that champion? We must, of course, equip students with the skills they need to be their own advocates. But we can also set up structures that help facilitate connections between coaches or mentors to students who are navigating the K-12 system. 3. You don’t have to reinvent the wheel. Too often when schools, districts, and states don’t need to start from square one when they begin a new education initiative. New initiatives can build from existing frameworks or past efforts. We can, for example, use research-based strategies like universal design for learning to make learning more accessible and engage more students, as a foundational part of any personalized learning effort. They don’t need to be separate efforts. Another example raised by panelist, Amanda Fitzgerald, is ASCA’s mindsets and behaviors for student success. If we have more counselors and educators taking these existing ideas seriously and incorporating them into their daily practices, we’d make up significant ground in implementing personalized learning approaches more inclusively. 4. Equity and inclusion are not automatic, but require thoughtful and intentional effort. As Joey Hunziker of CCSSO and others discussed , we can’t assume that any education reform strategy (like personalized learning) will address equity and inclusion without thoughtful effort on our part. If leaders have not been intentional and proactive in their efforts to build equity and inclusion into an educational initiative, opportunity gaps may very well widen, rather than close. We hope you’ll take some time to watch this expert event and, if you missed it or want to see it again, you can watch it on Understood.org. Please join us and stay engaged in this essential conversation!

2. Small interactions can lead to big change. For many students, one adult can make all the difference. For Elijah, it was a teacher. For Will, Provided by the National Center for Learning Disabilities. it was his mom. But without that one adult who © 2018 National Center for Learning Disabilities, Inc. All believed in and advocated for them, Elijah and rights reserved. Reprinted with permission. For more Will might have had very different life information, visit NCLD.org. experiences. But what can we do for students AmeriDisability July/August 2018


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Inclusion

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Lori and Bill Binko, LessonPix Co-founders AmeriDisability July/August 2018


Picture This… LessonPix Offers Visual Classroom and In-Home Support Materials By Ellen Callahan Already parents to three girls, in 2002, Bill and Lori Binko were expecting their fourth child – a boy. At the 20week ultrasound, doctors discovered their baby had Hypoplastic Right Heart Syndrome (HRHS), a rare and complicated congenital condition in which the heart’s right-sided structures are underdeveloped. The couple said, “We chose the name David because we knew he had giants to battle,” including at least three heart surgeries. David essentially was born without a right ventricle and, therefore, unable to pump blood to his lungs. He underwent immediate intervention to redirect blood flow, and spent much of his first year and beyond in the hospital. Nonetheless, David was a happy little boy with an infectious smile. Sadly, following what was supposed to be his final corrective operation, David suffered surgical complications and passed away at the age of 3 ½. His short life would soon prove to be incredibly impactful not only for his own family, but for thousands of families impacted by special needs. Lori says that, in addition to the heart condition, David had developmental delays. Coincidentally, her personal and professional experiences overlapped; Lori worked as an elementary level special education teacher. Frustrated by available resources, she found curriculum support materials for special education to be expensive, hard to use and simply not sufficient for either teachers or parents. “In school, I would make learning games, such as bingo, by hand and draw pictures to supplement curriculum. Soon, other teachers began asking for copies of my materials,” Lori recalls. And interest quickly grew beyond the classroom. “I would teach my families the power of visuals: first-then board, schedules, communication boards, etc.” She believed that “both schools and families needed something better” and, so, Lori and Bill made it happen! In 2009, the Binkos co-founded LessonPix, Inc. (lessonpix.com), an online tool for educators, therapists and parents to create visual support materials. With a tech background, Bill serves as COO overseeing website

operations, social media and marketing. Highly trained with a Masters of Education in Early Childhood Education with a focus on autism, in addition to her artistic abilities, Lori steers the company as CEO. “David is the inspiration and heart of why we do what we do ─ no doubt. Bill and I spent years in and out of the hospital with David, and alternating shifts for 24-hour care while raising our other three children. We know firsthand the strains to take care of a child with special needs: in money, time, research, relationships, sleep and heartache,” Lori says. That’s why LessonPix is designed to be affordable ($36/ year) and easy-to-use. “Unlike our competitors, we focus on supporting individual teachers and families of people with special needs, not just districts with budgets to spend,” Lori declares. LessonPix users create customized materials in three steps: 1) Select pictures – choose from a database of 35,000 images (many designed by Lori) or upload personal images; 2) Choose a template – options include picture cards, visual schedules, word wall words, Bingo games, communication boards and many more; 3) Print and use! “Today, schools and families use LessonPix for communication, curriculum, behavior and motor skills. In addition, we have been growing in supporting adults with special needs, English language learners and general education teachers,” Lori shares. Users can also export LessonPix symbols to preferred software tools, like Microsoft Word, PowerPoint and Smart Notebook. More than 30,000 users now rely on LessonPix! In addition to LessonPix, the Binkos operate two other companies that also support families impacted by special needs: ATMakers.org, a nonprofit that connects robotic teams and engineers with people who need assistive technologies; and Minor Achievements, a whole-child focused learning center (located in Tarpon Springs, Florida) that implements an integrated approach to language, social skills and movement.

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Inclusion

Former Florida Senator Continues to Impact Education for Students with Unique Abilities By Nancy DeVault child and to have the best opportunity to succeed,” Gardiner tells AmeriDisability Services. According to Gardiner, the 2018 class that just graduated in May is the first of inclusive students to graduate with a regular diploma. “These kids will be able to go to a community college with a regular diploma and take classes versus fighting to get in with a special diploma,” he says. The Gardiner Scholarship

Former Senator Andy Gardiner The disability-related efforts spearheaded by Former Senator Andy Gardiner continue to impact families well beyond his term. When he was sworn in as president of the Florida Senate, a position he held from 2014 to 2016, Gardiner publicly addressed his son Andrew, who has Down syndrome: “There isn't a day that goes by when I don’t think about what we can do in this Legislature to help you and others. I love you son, and I’m so proud that you’re my son.” Among other priorities, his term focused on a “Cradle to Career Pathway to Economic Independence for People with Unique Abilities.” Andrew, now 14, loves to play basketball and ride his bike. And, thanks to his father (and mother Camille, who co-founded the Down Syndrome Foundation of Florida), Andrew and other children with special needs have access to educational opportunities that were once unavailable. Improving Inclusive Education In 2013, Gardiner sponsored the Exceptional Student Education Bill which eliminated the special diploma because, generally, neither colleges nor employers recognized the degree. The bill’s passing defined inclusive education (including integration in typical classrooms) across school districts and allowed students with varying abilities to work toward a regular high school diploma. “These kids need to be on a similar track like every other 12

Gardiner says he worked to empower parents by creating choices; as with The Gardiner Scholarship Program which allows parents to personalize the education of their children (PreK-12) by directing money toward a combination of services and approved providers. In 2014, Florida became the second state in the nation, after Arizona, to create an ‘education savings account’ program for children with special needs. “Think of it as a bank account that allows parents to build an ‘a-la-carte’ education for their child,” explains Patrick Gibbons, public affairs manager for Step Up For Students, a scholarship funding organization that oversees the Gardiner Scholarship Program. “Senator Gardiner and his wife Camille have been tireless advocates for children with unique abilities and needs. We are proud to manage a scholarship program that bears his family name and we are grateful for their continued support,” says Doug Tuthill, president of Step Up For Students. In 2016, to his surprise, the Legislature renamed the program in recognition of Gardiner and his family – something he describes as a humbling honor. According to Gibbons, eligible students must either receive a home education or attend a private school, as other state payments are available for students attending free public charter schools and public district schools. The average full scholarship is approximately $10,000 per student, and renewal is required each year. The state appropriated $101.2 million for the 2017-18 school year and, as a result, Step Up For Students granted 9,612 scholarships and AAA Scholarships gave another 644. For 2018-19, the Legislature appropriated $124.6 million.

As outlined on the Florida Department of Education’s website, “Scholarships can be used for specialized services such as speech or occupational therapy, AmeriDisability July/August 2018


instructional materials, tuition at an eligible private school, contributions to a college prepaid account and more.” Malachi Kuhn, born with spina bifida, used the scholarship to pay for private school tuition in Ruskin, as well as after-school physical, occupational and behavioral therapy; and Abby and Christopher Alexander, Spring Hill siblings both on the autism spectrum, receive home education and services through scholarship funding.

Presently, 83 students receive FCSUA scholarships around the state. Both Gardiner and Kohler are hopeful that other states will follow with similar legislation to benefit institutions and students. Kohler says she’s encouraging colleagues in other states through the National Technical Assistance Center on Transition and the U.S. Department of Education. Father Figure Championing Families Gardiner is humble about his impact and has said he was simply a father in a position to “occasionally get things done.” Yet politicians and families alike regard Gardiner as an important change-maker. Kohler explains that his ability to recognize needs and solutions proved to be effective. “He had the vision and understanding to make it work, but also the leadership to see it all through. It wasn’t an easy task but he was able to engage the Senate, the House and, ultimately, the Governor to get legislation passed,” she says.

Photo courtesy of Florida Center for Studens with Unique Abilities. The Florida Center for Students with Unique Abilities Also in 2016, the Florida Postsecondary Comprehensive Transition Program Act established the Florida Center for Students with Unique Abilities (FCSUA). Located at the University of Central Florida, Gardiner describes it as a clearinghouse for college programs for individuals with intellectual disabilities.

Gardiner hopes the Legislature and next Governor will continue to empower parents by expanding funding. “I think there will be justification for it. You are going have more kids that are better prepared because of the scholarships and have more opportunities because of the special diploma going away. These programs are going to need to grow in my opinion,” he says. In addition to the Gardiner Scholarship and FCSUA, Gardiner supported other initiatives as part of his Cradle to Career Pathway to Economic Independence for People with Unique Abilities. For example, the Florida Unique Abilities Partner Program which recognizes businesses that employs individuals with disabilities and establishes a financial literacy program. There are currently 125 public and private entities registered as Unique Ability Partners, such as AT&T, Holiday Inn Express, McAllister’s Deli, Dollar Tree and Family Dollar. Others acts included the Florida’s Employment First Act, focused on improving work opportunities for people with disabilities and training human resource personnel on strategies to retain employees with disabilities; and the Achieving a Better Life Experience, geared to help individuals with disabilities save funds for future services and care.

“It’s the only legislation like this in the country. No other state has the resources available to help start these programs like we have in Florida,” said Dr. Paula Kohler, executive director of the Florida Center for Students with Unique Abilities. The legislation charged FCSUA with establishing (1) an institution application progress, (2) grant award development to aid approved institutions, and (3) scholarship program for incoming students. The Gardiner served in both the House of Representatives FCSUA team works with universities, state and (2000-2008) and the Florida Senate (2008-2016). He community colleges, career tech centers and beyond to currently serves as the Vice President of External Affairs establish programs, such as the Inclusive Education and Community Relations at Orlando Health. He and his Services at UCF. FCSUA is already assisting eight wife Camille are parents to Andrew, Jr., Joanna Lynn and approved programs and, according to Kohler, several Kathryn Lucille. other applications are pending. “We do workshops, webinars, site visits and provide resources. We try to help people think about what a program would look like at their institution and make sure they meet legislation requirements,” says Kohler; adding, “My vision is that we create lots of programs around the state so students and families can make choices based on their wants and needs.” AmeriDisability July/August 2018 13


July Health Awareness • • • • • • •

Cord Blood Awareness Month Disability Pride Month (NY) International Group B Strep Throat Awareness Month Juvenile Arthritis Awareness Month National Cleft and Craniofacial Awareness and Prevention Month Disability (ADA) Awareness Day (July 16) World Hepatitis Day (July 28)

Vohesu is a voice first digital transformation company focused on bringing our natural form of communication (voice) into our daily interaction with technology. We assist healthcare providers and doctors improve communication with their disabled patients by developing voice enabled applications, on Amazon Alexa and Google Home, to help patients:

August Health Awareness • • • • • • • • • •

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Cataract Awareness Month Children’s Eye Health and Safety Month Digestive Tract Paralysis (DTP) Month Gastroparesis Awareness Month National Immunization Awareness Month Psoriasis Awareness Month National Health Center Week (Aug. 13-19) National Senior Citizens Day (Aug. 21 Spinal Muscular Atrophy Awareness Month Stevens-Johnson Syndrome (SJS)

Understand their condition

Find local support services

Obtain medication information

Schedule appointments

Complete medical surveys

And much more! Your patients have a voice, let them use it!

For inquiries, please complete the “Contact Us” section at www.vohesu.com.

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ANYWHERE - ANYTIME AmeriDisabilityOnline.com 16

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In the Spotlight

Museum of disAbility History: An Inclusive Space of the Past, Present and Future By Ellen Callahan Society has come a long way in terms of inclusion. Sadly, not too long ago, awareness and acceptance of all abilities was far from the norm. Located in Buffalo, New York, the Museum of disABILITY History is dedicated to preserving and recounting the trials and triumphs of disability rights and persons with disabilities. Twenty years ago, Dr. James M. Boles, the CEO of People Inc. (a nonprofit human services agency in Western New York) recognized that accounts of how people with mental and physical differences were once perceived and treated were not well-kept or accessible. Thus, he established the Museum of disABILITY History (ModH) with a mission to advance the understanding, acceptance and independence of people with disabilities. Today, more than 2,000 museum visitors per year appreciate the impactful exhibits, educational programs, film/speaker series and special events. “We have a library in the basement and a good gallery space. We also have a theatre room where we show an introductory film and some exhibits,” Associate Vice President David Mack-Hardiman describes to AmeriDisability Services of the building which offers 8 permanent collections, 2 temporary collections and 11 traveling exhibits. “One of the issues with museums is that there’s only so much space to have things up. So traveling exhibits get shipped all over the country to allow the general population to see our exhibits because not everyone can come to the museum.”

pertaining to “idiots, distracted, impotent and idle persons.” Yes, those are harsh descriptive words and some of the museum’s exhibits do present the crude realities of eugenics, institutions, dated treatments and more. The museum also owns straightjackets and other institutionused restraints, a collection of old-fashioned mobility gear (i.e. braces, wheelchairs), a modified sled used in the first Winter Paralympics and an Invacar, an adapted UK-made vehicle primarily used in the 60s and 70s by disabled veterans. “In 1995 as New York State prepared to close the Willard Psychiatric Center, more than 400 suitcases were

Pieces of the Past The ModH library is a one-of-a-kind archive with thousands of books, documents, medical essays, photographs, postcards and more, including the museum’s oldest piece: pages from a 1750s acts and laws document 20

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Magic Fire: The Story of Camp Cornplanter, which is part of the museum’s library collection. Cause Collaborations In Celebration of Down Syndrome was one of ModH’s most successful showcases as of late. Created in partnership with Down Syndrome Parents Group of WNY, NYS Council on the Humanities and others, the exhibit explored “medical history, myths and facts, as well as success stories and popular culture.” Celebrity actors and advocates were featured, such as Lauren Potter, Christopher Burke, Jamie Brewer and model Madeline Stuart. It also included viewings of Kelly’s Hollywood, an inspirational documentary by actor/director Brian Donovan about his quest to fulfill the Hollywood dreams of his sister who has Down Syndrome. ModH regularly hosts disability-related film screenings, expert talks and other special events, including frequent appearances by Engelic Everett. The author, who has Down Syndrome, penned a children’s book titled Olivia the Bully, which is the museum’s top-selling book. It tells the story of Olivia the Rabbit, a third-grader who transforms from a bully to a hero.

discovered in the institution’s attic. Inside were photographs, letters, books and other mementos which tell dramatic stories of the individuals who lived there – their lives, their past, their history,” Mack-Hardiman said. The findings inspired an exhibit titled The Lives They Left Behind: Suitcases from a State Hospital Attic. “One of our goals is to try to tell these stories because so many people were institutionalized at that time. We also try to help families who are looking for date of death and other information about institutionalized ancestors,” MackHardiman explains. For the past ten years, the museum has also helped relatives through the restoration of institutional cemeteries. “We’ve connected with families who have been seeking some kind of closure. They’ve never really known where their ancestors were buried and we’ve helped them discover their final resting place,” he says. Restoration efforts were presented in an exhibit called Monument for the Forgotten.

Mack-Hardiman says he especially values ModH’s partnership with the University of Buffalo. “We have people with disabilities teach the medical student classes and talk about how they’ve been treated on their own medical appointments versus how they want to be treated. You can see perceptions change right in front of your eyes,” he says. ModH also hosts onsite educational opportunities for various schools and children’s groups because, as Mack-Hardiman explains, “We are looking at acceptance and doing whatever we can to try and promote that in any way possible.” For more information or to view a plethora of digital resources, visit MuseumOfDisability.org.

In 1977, alongside a friend whose sibling had a disability, Mack-Hardiman took a summer job at Camp Cornplanter, the first residential camp for persons with disabilities in North America which operated from 1959 to 1984. He worked there for six years and served as the Assistant Director of the camp in the early eighties. “The first day, I loved everything that I was doing and stayed in the field for 41 years,” Mack-Hardiman declares. When the camp went out of business, he worked to bring camp memorabilia to the museum and authored the book The AmeriDisability July/August 2018

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The purpose of the Florida Center for Students with Unique Abilities is to provide support to students, families, and institutions of higher education so that students with intellectual disabilities have opportunities for on-campus college experiences that lead to employment opportunities. Source: www.fcsua.org/

Inclusive Education Services (IES) at the University of Central Florida offers students with intellectual disabilities an inclusive, comprehensive non-degree seeking academic experience. IES offers a structured curriculum that will take 2.5 years to complete. Students will complete several units and will receive recognition for completing the course of study. Source: www.ies.sdes.ucf.edu/

Source: www.thinkcollege.net/family-resources AmeriDisability July/August 2018

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In the Spotlight

A Brighter Future for People with Color Blindness By Ellen Callahan Lakeland resident Michael Hoffman recalls his kindergarten teacher questioning his cognitive abilities because, when coloring, he made the sky green and the grass purple. In disagreement over the reasoning of his skewed drawings, his mother took him to an optometrist. The diagnosis: color blindness, a vision deficiency that affects color perception. Hoffman, now 64, says he’s only been able to see light and dark shades of gray and a little bit of yellow. There are three kinds of color blindness, according to the National Eye Institute, based on photopigment defects in the cones that respond to blue, green and red light. Redgreen color blindness is the most common, followed by blue-yellow color blindness and blue cone monochromacy which may mean a complete absence of color vision. As many as 300 million people worldwide (primarily men) and roughly 13 million in the U.S. are color blind. “I never thought of it as a disability,” says Hoffman but, as people with other impairments do, he says, “I learned to adapt.” Color blindness, in fact, is an inherited abnormality of the photopigments, color-detecting molecules located in coneshaped cells within the retina (called cone cells), and considered a mild disability. Several genes are needed for the body to make photopigments and defects in these genes cause color blindness.

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“As a child, I remember realizing crayons had words printed on them and, so, I faked being able to differentiate color by reading the labels,” Hoffman recalls. As an adult, he learned to obey traffic lights by memorizing signal position rather relying on green, yellow and red transitions. And his wardrobe consists solely of black, white and gray garments. Color blindness has affected his appreciation for art, nature and food; and, as a result, he’s relied on his senses of smell and taste. “Somehow I related color to scent. For red, I related to cinnamon candy or something hot. For green, I thought of the smell of fresh cut grass,” he describes. Others affected by color blindness struggle with cooking (for example, inability to distinguish raw from cooked meat), reading maps and career limitations (i.e. inability to work as pilot, first responder, etc.). A French teacher at Haines City High School, Hoffman says it was necessary to tell his students about his color blindness because, “A couple of times, kids handed in papers that I thought were blank because I couldn’t see the colored ink they used.” Ironically, Hoffman’s classroom was full of vibrant colors, in part because the course curriculum included French art assignments. Some of his students regretted that their beloved teacher couldn’t grasp the beauty he created and inspired.

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“Mr. Hoffman is one of my favorite teachers and I wanted to show him that we all appreciated him,” sophomore Jun Ling explains. Through viral YouTube videos, Ling learned about EnChroma glasses which contain technology designed to enriched spectrum of color. In December, Ling pooled together enough money from 11 students and two teachers to gift a pair to Hoffman. “The glasses enhance the vibrancy and saturation of certain colors and improve color discrimination, depth and detail perception,” explains Kent Streeb, Director of Marketing for EnChroma. “They contain special optical filters that remove small slices of light. This establishes a more accurate (not 100% perfect) ratio of light entering the three photopigments in the eye so the color blind have a more normal spectral response.” EnChroma started in 2010 following three National Institutes of Health (NIH) SBIR funded studies.

EnChroma has an online color blindness test. Eyewear for men, women and children is available in prescription polycarbonate (plastic) and non-prescription acrylic lenses for pediatric, sports and industrial safety usage indoors and outside. The glasses range in price from $349 to $429 and are available in lifestyle, sports and kids frames. EnChroma sells directly to consumers via EnChroma.com and through nearly 200 retailers (primarily optometry practices). Curious even if you can see color? Download a free app, Chromatic Vision Simulator, which simulates the dull perception of color vision deficiencies. Hoffman proclaims that the glasses have impacted much more than his ability to see color. “These students have made a life-changing impact… and I believe they get that depth and feel good about what they’ve done for me.”

The experience has been overwhelming for Hoffman – blown away by both of generosity of his teenager pupils and seeing the world for the first time in a new light. “I had no idea that the sky is not just one blue… it’s a rainbow of blues from lighter to darker shades to purple hues and so on. I just thought the sky is blue and the grass is green, but it’s much more complex than that,” he proclaims. His students are helping him make revelations too. “I first saw purple on a student’s backpack and it was such a deep color that I never knew.” Streeb says EnChroma does not claim to be a “cure,” “correction” or “fix” for color blindness. He says the glasses work for 4-out-of-5 red-green color blind people. Hoffman says, “It’s still hard for me to identify color but I’m blown away by the nuances of color -- particularly in nature -- that I’ve never been aware of.” However, he admits that the dark EnChroma lenses, similar to sunglasses, can be challenging to use indoors. Nonetheless, from art galleries to flower gardens, he declares, “Every time I put them on, there’s a new Michael Hoffman, Haines City High School Teacher discovery!” AmeriDisability July/August 2018

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In the Spotlight

Sarah Foley Writer / Speaker After an ATV accident left Sarah a T4 Complete paraplegic her website, VerticalBlonde.com, came to fruition. She instills motivation and universal lessons she has learned from her journey in her blogs and is available for speaking engagements.

“Remember to see over and beyond your hurdles, keep your focus up while using those hurdles like stepping stones towards your goals.” -Sarah

Optimist Sarah’s message of living vertically stemmed from her desire to stand and walk again, and has become a mindset of how she chooses to see her life and obstacles.

Ms. Wheelchair Hawaii 2018 Sarah was crowned Ms. Wheelchair Hawaii in 2018. She will be competing for 2019 Ms. Wheelchair America competition in Grand Rapids, MI on July 30 - August 5, 2018.

The Vertical Beauty Project The Vertical Beauty Project gives women, with disabilities, including spinal cord injury, makeovers and photo shoots to capture their strength and allow their outer beauty to match their inner beauty. “It’s incredible what happens when these women see themselves as empowered, beautiful human beings.” www.VerticalBlonde.com 26

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Photo by Juniper Ruby for Mermaids on Maui. AmeriDisability July/August 2018

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Jeff Bridges

JOHN BRAMBLITT Bramblitt.net


autism, adults with Alzheimer’s, people with epilepsy and other issues ─ and I felt at home. Even though what we were dealing with wasn’t the same, we understood each other on a deep level. It was wonderful for me to be around these people who just got me and I got them. It definitely pushed my art forward.”

In the Spotlight

The Beautiful Artistic Vision of a Blind Artist

Making Masterpieces

By Nancy DeVault Texas-native John Bramblitt proclaims, “I think I could draw before I could walk;” but he never envisioned his art hobby would become a career. In fact, he was studying creative writing at the University of North Texas. Then, epileptic seizures impacted his brain’s ability to control vision and, by his mid-twenties, John was blind. John faced depression as he adapted to life with a new disability; but, soon, realized his hands (via touch) could achieve what his eyes (via sight) previously did. “After I learned to navigate the house and getting to campus, I thought ‘if I can navigate a city, surely I can navigate a canvas.’” He started painting to work through his depression and to reconnect with loved ones by portraying his feelings. His reach, however, far exceeded his expectations. John’s art has now been sold in over 120 countries! When gallery show opportunities first arose, John stayed mum about his disability. He simply wanted the art to be appreciated for what it was, rather than because of who created it (and how). It didn’t take long for raving media reviews to reveal his remarkable talent and impressive creative process. “The attention actually helped me heal and grow as a person and an artist because I was [then] contacted by various charities and nonprofits that wanted me to talk to their clients or do workshops,” John explains. “Through that, I met soldiers with PTSD, children with

So, how does a blind artist navigate a canvas? John adds braille labels to paint tubes but, more importantly, his accuracy is accomplished from creating raised lines with each paint stroke. He figured out how to identify and control paint colors by mixing different mediums to achieve specific textures. “The mediums are the stuff in the paint that holds the pigment of the color. You can make the medium feel really thick or thin, or like oil or water.” Initially, it took John about a month to complete a painting but, now with his fine-tuned method, he’ll finish a piece in just a couple of days. “I also mix drying agents into my paint. I can actually draw a line and have it dry almost instantly,” he adds. “John never ceases to amaze me. After having witnessed him paint for many years, I understand the process but it still baffles me that he can draw out his compositions so well. I feel blessed that he has been able to overcome this adversity and, more so, that he shows our [10-year-old] son on a daily basis that anything is possible,” says John’s wife, Jacqi, who is also an artist (focused on photography and design). Her sentiments are shared by many. The now 47-year-old painter’s life has even been featured in two short films, “Line of Sight” and “Bramblitt.” Despite his success, John remains humble and passionate, “My work is just about how I feel. And if people connect with it, then that is a huge gift!” A Colorful Future When John began painting, he describes the work as dull and geometric with muddy colors which he believes reflected his depression. As his life illuminated with restored and newfound happiness, he gravitated toward

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brighter colors, recounting, “Once my son was born, it was like color exploded in my life again.” John jokingly declares, “Every painting that I work on is my favorite because it’s the process that I love… being in that moment!” So while he, of course, enjoys displaying work in galleries, John truly enjoys helping others discover the bright and joyful process of painting. He leads various lectures and multi-sensory workshops at art facilities, schools, nonprofits and beyond. Many budding artists are especially intrigued by his ‘Blindfold Painting’ sessions where John instructs participants on techniques that mimic his own manner. He’s slated to lead this and other classes this summer as an ‘artist-in-residence’ in Tulsa and Oklahoma City, and is also set to tackle some BIG canvases: two four-story murals in the Dallas art district. Leaving a Legacy While painting took the forefront, John never lost his love for writing. He penned a personal memoir, Shouting in the Dark, about his journey through vision loss, depression and finding artistic vision. “Reading and hearing stories from other people who were battling disability really helped me. I wanted to contribute to the dialogue,” he shares. “Now, I try to be a great advocate for disability too.” John’s actually discovered that many artists also face either physical or mental challenges. “Art is just a message, and people with disabilities have a lot to say,” he explains; adding that he’s pleased to notice an increase of acceptance and awareness, “People used to hide their disabilities and now I think it’s a great turning point for [disabled] artists and all people with disabilities.”

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While his book was one of many professional highlights, his ultimate career objective naturally involves a canvas and paint. “I have a goal, before I die, to do a perfect painting ─ a painting that describes exactly what I’m feeling… and I’m still working on that,” John says. Visit Bramblitt.net to learn more about the life and works of John Bramblitt, explore workshops and to purchase paintings.

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Strength and Wisdom Satchmo Paris at Night The King Midnight in the Park Lead Bull, Artist John Bramblitt

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In the Spotlight

Photo courtesy of Florida Hospital. 34

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American Ninja Warrior Contestant Jimmy Choi Inspires Others with Parkinson’s Disease By Ellen Callahan Jimmy Choi was diagnosed with Parkinson’s disease in 2003 at the age of 27. “The doctors told me that I would have about 15 good working years left, and that I should do whatever I could to prepare for my future,” he tells AmeriDisability Services. Well, now at that cautioned 15year mark, Choi, a husband and father of two, continues to thrive both professionally, as a chief technology officer, and personally, as a marathoner and contestant on American Ninja Warrior (the NBC television program that challenges competitors to tackle physically demanding obstacle courses). Parkinson’s disease is a central nervous system disorder affecting movement. According to Florida Hospital, Parkinson’s affects up to one million people in the U.S., including 20,000 in Central Florida alone, totaling more people than Lou Gehrig’s disease (ALS), muscular dystrophy and multiple sclerosis combined. When Choi’s symptoms first presented, including tremors, rigidity, fatigue and loss of balance, he attributed them to ordinary causes like work-related stress, exercise-induced soreness and general clumsiness. “Initially, I was so young. Parkinson’s is not the first thing you think of when you start experiencing health issues,” he explains. Even after receiving the diagnosis and relying on a walking cane, Choi remained in disbelief… until the day he defines as his “rock bottom.” He fell down the stairs in his home while holding his infant son in his arms. After seven years of denial, it was an overdue wake-up call to take control of his health. To aid research, Choi began volunteering for Parkinson’sfocused clinical trials. He noticed physical activity was a vital component among all the trials. “For Parkinson’s, there things you must do,” proclaims Marti Miller, president of the Parkinson Association of Central Florida and caregiver to her husband, David, who has Parkinson’s. She says, “Educate yourself about the disease, take your medication (and on time), exercise, eat properly and socialize in order to live a long life with this disease.” These lifestyle changes were gradual for Choi ─ but they worked! “I started walking around the block once with my family using my cane and, eventually, was stronger and more confident to go twice. Then, I could go without the cane. Every day I worked to build muscle memory and believe I was building neuropathways in my brain,” Choi says. He found joy pushing his boundaries with a daily exercise routine. Over several years, Choi rebuilt strength and stamina, and exceled at three high-performance sports:

running, cycling and obstacle course training with crossfit and calisthenics. Aside from the physical aspect, Choi explains that mental effort is a factor because his body requires modifications. “I drag my right leg, so I mentally tell myself to pull my knees up toward my chest and pick up my leg,” he says. When cycling, Choi favors his left side because of muscular tremors on his right. Last year, the now 42-year-old opened up to TV viewers about his physical limitations and consequential adjustments during his America Ninja Warrior appearance. He felt compelled to challenge himself, but to also compete on behalf of the Michael J. Fox Foundation to increase Parkinson’s awareness. “I said that taking that first step was the hardest thing anybody can do, but the rest of it then comes more easily,” he recalls of the taping. His obstacle run didn’t go as he hoped. However, American Ninja Warrior invited him to return for a second attempt (to air summer 2018), and Choi offered a new inspirational message: “Once you’ve taken that first step, it’s going to be hard and you might fall down… but you get back up and do it all over again!” Now as an advocate, Choi empowers others with the disease. “We need to give our bodies a better chance of performing. It doesn’t matter what you’re faced with… if you make your body healthier, you are going to feel better,” he declares. In the spring, alongside physicians and researchers, Choi spoke at The Brain and Beyond Conference in Orlando, hosted by Florida Hospital and the Parkinson Association of Central Florida. “A conference like this gives young-onset or nearly diagnosed individuals access to people, networks and information,” says Choi. More than 500 patients and caregivers learned about the latest trends in managing symptoms and improving quality of life. “Education is power and it is our goal to provide as much education to the community as we can,” says Anissa Mitchell, Parkinson’s outreach program manager at Florida Hospital. “Medication and surgical management of symptoms is just one way to battle Parkinson’s. Exercise is key to managing the disease as well. Jimmy is a prime example of how much exercise can benefit someone with Parkinson’s and he also proves that, despite starting years after the diagnosis, he was able to regain strength and physical fitness. You can fight back,” she affirms. At the conference, the Parkinson Association of Central Florida donated $250,000 to Florida Hospital to impact patients. Mitchell says the funds will develop a comprehensive movement disorder program within the Florida Hospital system complete with fellowship-trained

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www.ncld.org

A comprehensive online resource that empowers parents of children with learning and attention issues through personalized support, daily access to experts and specially designed tools. www.understood.org/en

Photo courtesy of Florida Hospital. movement disorder neurologists, mid-level practitioners (such as nurse practitioners or physician assistants), physical/occupational/speech therapists, social workers, neuropsychology/psychiatry experts and nutritional counselors. Choi also honestly shares how Parkinson’s affects more than visible mobility skills, but understands that many solely associate the disease with tremors. “For example, your executive function in the brain starts to slow down. You lose your sense of smell, cholesterol levels drop and blood pressure lowers because anything that’s a muscle – and your heart is a muscle – can be affected by Parkinson’s. You can experience constipation because the intestines aren’t pushing normal,” Choi explains. “Parkinson’s is a complex disease,” Mitchell adds. “It’s not just about movement; it also impacts mood and emotions and, often, treatments only focus on movement problems. We are seeking to improve care in Central Florida so that it is more holistic and treats the whole person, including care partners because we know they are affected as well.” Patients and caregivers can stay up-to-date on research and m o r e a t P a r k i n s o n s N e w s To d a y. c o m . F o r m o r e i n f o r m a t i o n , v i s i t P a r k i n s o n C F. o r g a n d FloridaHospital.com/Parkinsons-Disease-pd.

An online community that offers information and support for young adults with learning differences. www.friendsofquinn.com

A comprehensive guide about learning and attention issues for pediatricians and pediatric nurse practitioners. www.ldnavigator.ncld.org

A source for tools and tips to develop literacy skills in early learners. www.getreadytoread.org

BECOME A CONTRIBUTOR AmeriDisability magazine welcomes article submissions and story ideas. Promote an upcoming event, share your story or suggest industry news topics. Contact us at info@AmeriDisabilityServices.com 36

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In the Spotlight

Mental Health Association Helps Families Find Support By Nancy DeVault Mental health is a global issue on the rise; yet, it seems that an unfortunate stigma remains. Those impacted by mental health often feel a sense of shame and/or discrimination, even though mental health challenges are fairly common. According to mentalhealth.gov, operated by the U.S. Department of Health & Human Services, data collected in 2014 found that about 1-in-5 American adults experienced a mental health issue; 1-in-10 young people experienced a period of major depression; and 1-in-25 Americans lived with a serious mental illness such as schizophrenia, bipolar disorder or major depression. Managing a mental health issue can be challenging ─ similarly to dealing with other ailments ─ but, unlike other conditions, people tend to struggle more so with knowing where to seek care. That’s what makes organizations like the Mental Health Association of Central Florida (MHACF) so important. MHACF is affiliated with the national Mental Health America network though, since 1946, this privately-run nonprofit has facilitated initiatives geared to meet the specific needs of its local community with education, advocacy and outreach. It serves about 10,000 people annually through various programs and support groups. “People often come to us when they don’t know where to start or have been looking for help and are frustrated,” says Charlotte Melton, Vice President of MHACF, adding, “We also connect with the families of people who have been discharged from a Baker Act to help them find discharge services. The local receiving centers include our Mental Health Connections Program on their discharge paperwork as a resource.” Melton describes Mental Health Connections as a free information and referral service that takes the leg work out of treatment navigation. “A call to our office or a click on our website connects you to the program where we ask a few questions about your situation, your coverage (or lack thereof), transportation limitations and preferences to begin the process,” she says. MHACF then matches a requestor ’s needs with appropriate resources and providers. “It can be so hard to 38

Photos of MHACF’s 2018 Legacy of Champions Luncheon. get to the point of wanting and accepting help that the rejection and frustration of finding it can make many quit before they get the support they deserve,” Melton offers. In partnership with Florida Hospital and other collaborators, MHACF’s Outlook Clinic has successfully offered treatment to those diagnosed with depression or anxiety, and a co-occurring medical diagnosis. Currently, the service caters to those 18+ years living in Orange County who are uninsured. Since its inception in 2010, the Outlook Clinic has served 1,400 residents. MHACF also offers: Reflections, a program inclusive of Provides Arrows, a suicide-affected support group, a suicidal ideation support group and People Inc., a peer-facilitated mental health support group; Guardian Advocate, a volunteer effort coordinating temporary guardianship of those who are Baker Acted in an effort to advocate for the best inpatient care; and Orlando United Counseling and Outreach, established just days after the tragic shooting at Pulse nightclub to provide recovery services. Actress Glenn Close, founder of the mental health nonprofit Bring Change to Mind, donated funds to launch Orlando United Counseling and Outreach. “What we learned after 9/11 is that the effects of trauma from an event like that can last up to eight years and can take several years to surface,” says Melton, adding, “We have extended the program to include community education of the ongoing and physical effect trauma can have.” Through Orlando United Counseling and Outreach,

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help doesn’t make you weak! The effort to ask for help shows strength,” Melton proclaims. You don’t have to be a celebrity to impact awareness and change. The state of Florida, sadly, ranks last in nation for funding mental health treatment. “In Florida, we allocate $14 per person in mental health funding. That funding is quickly used up by deep end services for clients who could have been supported by the Medicaid Expansion that Florida didn’t do, leaving the rest of the population without state support,” says Melton. MHACF encourages residents to participate in Elect Health Florida (#ElectHealthFL), a campaign informing legislators about constituent’s desires pertaining to improved access to medical and mental health services. You can easily send an email to your legislator through MHACF’s online template.

MHACF has executed recovery workshops for police forces, first responders, city/county personnel and other community members, in addition to other efforts. Within the past two years, 120 clients have accessed this free program. Close isn’t the only celebrity championing mental health awareness. In May 2018, actress Brooke Shields, who’s been vocal about her battle with postpartum depression, gave the keynote address at MHACF’s Legacy of Champions Luncheon, an annual fundraiser attended by 600 community members. “It is so valuable to have someone we idolize share candid experiences with that struggle. She has all the access to support someone could ask for and, yet, she was just as lost as any one of us would have been. She reminded the room that needing

For assistance in the Orlando area, contact MHACF at (407) 898-0110 or mhacf.org. For general information on mental health or to locate treatment services nationwide, contact the Substance Abuse and Mental Health Services Administration (SAMHSA) Treatment Referral Helpline at 1-800-662-HELP (4357) or samhsa.gov. The National Suicide Prevention Lifeline (1-800-273-8255) is manned by trained crisis workers available to talk confidentially 24/7. Currently, all MHACF’s programs are free of charge and the organization’s tagline is powerful reminder: “It’s Okay to Get Help!” That’s true for both the person facing mental health hurdles and concerned loved ones.

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In the Spotlight

Meet Isabella Matos: An Adaptive Athlete Paving the Way on the Right Track By Nancy DeVault

“When the opportunity came, I was hesitant at first because I thought it would weird to be the only girl in a wheelchair on a team of runners. It seemed ironic,” Isabella admits. Fortunately, her parents, Kathy and Manny, convinced her to give it a try. Isabella recalls “being terrifying” at her first track meet freshman year because all eyes were on her – literally. She was the only wheelchair competitor and, thus, raced solo! That lone set-up has remained the norm; her adaptive race is usually just before the standard competition of the same distance. However, she now says, “It’s more a feeling of excitement because I love it so much! I get to try to beat my own times.” And she’s learned to feed off the crowd’s attention and really enjoys being a part of a talented team.

Photos courtesy of Isabella Matos’ Go FundMe Page. It’s been only three years since 16-year-old Isabella Matos joined her high school track and field team. The newbie athlete, who is wheelchair-bound, just completed her junior year by earning gold at the Florida High School Athletic Association (FHSAA) State Competition. And, not just one gold medal… Isabella claimed top ranks in all of her events: 200-meter, 800-meter and shot put. Currently, these are the only three events available to adaptive track and field athletes in the state. In middle school, Isabella crossed paths with Joseph Monks, the track coach at Cypress Bay High School in Weston, Florida. He was recruiting incoming freshman for the team. Born with cerebral palsy (which hinders the use of her legs and arches her spine), Isabella was quite surprised when he asked if she was interested. She remembers thinking, “Is he serious?!” But the coach encouraged her to explore adaptive track and field ─ something the shy teen didn’t know was an option. 40

Isabella competed with Cypress Bay High School for two years and, after her family relocated back to their hometown of Winter Garden, Florida, she joined the squad at West Orange High School where she trains alongside her teammates. “I usually do the same workout but with a reduced number. For example, if they do something six times, I’ll do it two to three times,” she describes. That’s because Isabella tires quickly because of ill-fitted equipment. When she began racing, she used her heavy, everyday wheelchair which took a toll on both her chair and her body. This year, Isabella received a racing wheelchair on loan from Dixie Wheelchair Athletic Association. It’s made a big difference but, since it’s too big for her, training and racing still isn’t as smooth as it could be. Through GoFundMe, she’s trying to raise $3,500 for a custom-made racing wheelchair. So far, contributions total $635. Teenage life for a wheelchair-user comes with added challenges. Sport participation has become a much needed stress-reliever and confidence-booster for Isabella. “Track is sort of like a way to get away from everything else. It’s just nice to be on the track going fast and not worried about the other struggles I face with my wheelchair or crutches,” says Isabella, who favors the 200-meters because of the face sprint factor. “On the track, I feel like I am a regular athlete! And it’s a good feeling.” This summer, Isabella competes in the Adaptive Sports USA 2018 Junior Nationals and then gears up for her final year as a high school track star. “For my senior year, I want to do even better and compete at the national level and maybe even international level,” she shares. Isabella hopes to land a scholarship to attend the University of Illinois to compete on their adaptive track and field team and also

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study law. But her aspirations don’t stop there! “I want to go to the 2020 Paralympics in Tokyo. That’s the number one thing on my bucket list… to compete for the United States and help show people that if you put your heart and soul into doing what you like, there’s no obstacle that can stop you,” she proclaims, adding, “Anything is possible. Never give up on yourself!” Isabella is now officially classified as a T34 Para-Athlete and has been able to compare her times to others nationwide. “She’s already qualifying for competition on a national level. So, once she receives her custom-made chair and is able to properly focus on training with the right equipment, it’s going to be at a whole new level and really awesome,” says Manny, adding that, “As proud parents, these are things you dream about and it’s so nice to see her dreams come to pass.”

Future College Students

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Parents or Family Members

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http://www.nccsdonline.org/

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In the Spotlight

UCF’s Adaptive and Inclusive Recreation Program A conversation with Sport Clubs and Adaptive Recreation Coordinator, Andrea Snead By Haley Brittingham More and more schools are realizing the importance of providing adaptive sports and recreation activities for their students. University of Central Florida, one of the largest universities in the country, is leading the way with adaptive sports and workout equipment as well as annual events that showcase various adaptive sports offerings for students. AmeriDisability Services had the opportunity to speak with Andrea Snead, Sport Clubs and Adaptive Recreation Coordinator at UCF’s Recreation and Wellness Center, to learn how UCF is working towards a more inclusive environment. Q: Please share a bit about your background and how it led you to your current role as Sport Clubs and Adaptive Recreation Coordinator. A: Ironically my background doesn’t include much with adaptive recreation. I began my recreation career in athletics and transitioned to recreation specifically in aquatics. I received the opportunity to oversee our adaptive programming which was then our Adaptive Recreation Expo and our Student Assisted Workout Program. I knew we had the potential to do much more so that’s when I decided to really take a look at what more we can do, which blossomed into other professional staff members who truly bought into being inclusive. Hence, the name change of our expo’s current name, Inclusive Recreation Expo. Q: What was the motivation for providing more inclusion to the RWC? A: My motivation is twofold. I see students that want to participate in these activities but the access or adaptations are not there and we have the ability to provide that for them. On the other hand I see a plethora of individuals who are able bodied that think the entire population are 42

sitting at home being taken care of when they work and get their education in the same way. We are able to expose them to sports they’ve never seen or participated in and again, we have that ability to make that happen so why not UCF. I want this program to bring students to UCF that we may not see every day and I want to assist in providing the access for higher education through sport. Q: What other school adaptive sports and recreational activity programs have inspired you? A: From a sporting side I would definitely say Alabama and Illinois, and on the recreational side, it would be Portland State. The difference from the sporting side that I would like to do differently from Alabama eventually is work from an inclusion standpoint by having basketball games at our arena on campus, but of course, I’m not ruling out a separate facility! Q: What are your future goals for the UCF RWC with regards to increasing more inclusion? A: The main goals that I have is to have a wheelchair basketball and wheelchair tennis team by Fall 2019. I’ve been working with some students who asked for help in creating a registered student organization so they are well on their way currently. The other is to continue to grow the participation in the intramural tournaments we host for both our adaptive and inclusive sports. Q: What are some of your highlights from previous years’ Inclusive Recreation Expo? A: My favorites were the wheelchair rugby components because it’s a more aggressive sport that some folks are more surprised about it being in existence, so I’m excited for that to be back during this year’s expo. The second is when we added in the Special Olympics partnership and began including Unified basketball games. That is why we changed the name to the Inclusive Recreation Expo because it not only provided for the addition of the Special Olympics but it allows for the inclusion of able bodied participants. Finally, I would say because we add things like blindfolded yoga, wheelchair tennis, and badminton. Now we are able to incorporate activities that are not necessarily competitive, but the last two can be if needed. We already have yoga classes, and badminton is set up and available on Court #1 most of the day for students who want to check out the equipment and play. It is about highlighting these things that we have available in this building that folks do not know about, and they now can go out and generate the conversations not knowing who it could get back to. Maybe that student in high school, who may be in a wheelchair, and they are trying to decide where to go to college. I want that choice to be without a doubt, UCF. Q: Aside from the annual expo, what other efforts are being made to increase inclusion across the UCF campus?

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Photos this page courtesy of the University of Central Florida. A: We continuously are adding inclusion into the fabric of what we do every day. For example, we knew we were in the market for a new dock at Lake Claire so instead of forgetting that we have an adaptive kayak, we kept that in the forefront and knew when it came time to replace the dock, it had to be one that would be accessible. So that’s what we did. As far as hiring goes, while we aren’t out seeking only people with disabilities, it’s an incredible thing to have someone come into our facility and see that our facilities scheduler has a wheelchair. Some people tend to go where they see themselves and they ask questions. They see what we offer in the RWC and they quickly realize it isn’t a gimmick that we truly stand behind what we say and we take action. It’s one thing to be diverse. It’s another to be diverse AND inclusive.

For more information about Adaptive and Inclusive Recreation at UCF’s Recreation and Wellness Center, visit: http://rwc.sdes.ucf.edu/programs/adaptive-and-

inclusive Stay up to date with the latest happenings at the RWC by following them on social media: Facebook - https://www.facebook.com/ucfrwc Twitter - https://twitter.com/ucfrwc Instagram -  https://www.instagram.com/ucfrwc/

Q: What feedback have you had from students with disabilities that have utilized the adaptive fitness equipment and/or have participated in the Expo? A: The feedback we get most is they are truly inspired by the fact that some of our equipment is in the middle of the weight machine floor. They mention that usually where they go the equipment they can use is in a corner somewhere and they feel isolated. Although our weight floor can be intimidating for anyone, it does make them feel good to see that the types of equipment we have down there can be utilized by EVERYONE. We’ve also gotten that they think it’s really exciting that we have the wheelchair sports and that able bodied students can play with them.

Andrea Snead Sport Clubs and Adaptive Recreation Coordinator Recreation and Wellness Center University of Central Florida 4000 Central Florida Boulevard, Building 88 Orlando, FL 32816-3548 www.UCF.com

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AmeriDisability July/August 2018


Around Town

July 21, 2018

July July 6, 2018 Farmingdale Special Education Surf Outing Long Beach Blvd Beach Long Beach, NY

Seeking Justice for Autism Walk-A-Thon Baseline Road Trail Park Ocala, FL

July 7, 2018 TSF Invasion- Surfers for Autism St. Pete Beach Saint Petersburg, FL

July 22, 2018

July 9, 2018

Go For It Golf Clinic Emerald Golf Club New Bern, NC

2018 USBLN 21st Annual National Conference & Expo The Cosmopolitan Hotel Las Vegas, NV July 14, 2018 Deaf Awareness Day at Aquatica Orlando Aquatica Orlando Orlando, FL

July 29, 2018 2018 iCan Bike Camp Orange County Convention Center Orlando, FL July 30, 2018 38th National Veterans Wheelchair Games Orange County Convention Center Orlando, FL

August

July 14, 2018 Deaf Social Night at Universal Studio City Walk Universal Studios City Walk Orlando, FL

August 3, 2018

July 15, 2018 The 2018 Disability Pride NYC Parade Parade starts at Madison Square, Festival at Union Square New York July 19, 2018 National Veterans Golden Age Games Albuquerque Convention Center Albuquerque, NM The National Consortium for Physical Education for Individuals with Disabilities Annual Conference Crowne Plaza Crystal City Arlington, VA 46

August 4, 2018 9th Annual Inlet Surfers for Autism Beach Festival Ponce Inlet Beach New Smyrna Beach, FL

AmeriDisability July/August 2018


August 18, 2018

September 16, 2018

Modified Intro to Safe Sitter Florida Hospital for Women Orlando, FL

September September 15, 2018

National Veterans Summer Clinic VA San Diego Healthcare System San Diego, CA September 29, 2018 5th Annual Marion County Disability Resource RoundUp Early Learning Coalition

30th Annual Give Kids the World Village: Black & White Gala The Hyatt Regency Orlando Orlando, FL

For more events or to promote your event go to: www.AmeriDisabilityOnline.com

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Visual Impairment Scholarships

Educational Resources

Brother James Kearney Scholarship Program for the Blind www.lavellefund.org/ www.lavellefund.org/scholarship-program/overview/

Federal Pell Grants Federal Stafford Loans Federal PLUS Loans www.fafsa.ed.gov/

National Federation of the Blind Scholarship Program www.nfb.org/ www.nfb.org/scholarships

Scholarships General Scholarships American Association on Health and Disability www.aahd.us www.aahd.us/initiatives/scholarship-program/ Disability Awareness Scholarship www.militaryvaloan.com www.militaryvaloan.com/disability-scholarships.html

Chronic Health Condition Scholarships National Multiple Sclerosis Society Scholarship www.nationalmssociety.org www.nationalmssociety.org/Living-Well-With-MS/Workand-Home/Insurance-and-Financial-Information/FinancialResources/Scholarship-Program/Scholarship-Application-

Hearing Impairment Scholarships Alexander Graham Bell Association for the Deaf & Hard of Hearing www.agbell.org www.agbell.org/Connect/AG-Bell-College-ScholarshipProgram

Lighthouse International Scholarship and Career Awards www.lighthouseguild.org/ www.lighthouseguild.org/programs-services/scholarships/ American Council of the Blind Scholarship www.acb.org/ www.acb.org/scholarship

Intellectual Disability Scholarships Ruby’s Rainbow www.rubysrainbow.org www.rubysrainbow.org/apply-now/ The Schwallie Family Scholarship www.researchautism.org www.researchautism.org/how-we-help/scholarships/ The Lisa Higgins Hussman Scholarship www.researchautism.org www.researchautism.org/how-we-help/scholarships/ Joe Cleres Memorial Scholarship www.newoutlookpioneers.org/

Cochlear Americas https://www.cochlear.com/us/recipients/nucleus-5/ nucleus-5-support-and-community/scholarships/ scholarship-details Sertoma Scholarships for the Deaf and Hard of Hearing www.sertoma.org www.sertoma.org/what-we-do/scholarships/ Louise Tumarkin Zazove Foundation www.ltzfoundation.org/ www.ltzfoundation.org/scholarships.php

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www.microsoft.com/en-us/diversity/programs/ microsoftdisabilityscholarship.aspx Pine Cone Foundation www.pineconefoundation.org/ Rise Scholarship Foundation www.risescholarshipfoundation.org www.risescholarshipfoundation.org/apply-now/

Mental Illness Scholarship The Center for Reintegration www.reintegration.com/about-us-1/ www.reintegration.com/scholarship-program/

Learning Disability Scholarships Allegra Ford Thomas Scholarship Anne Ford Scholarship www.ncld.org/ www.ncld.org/scholarships-and-awards/

Mobility Scholarships

BMO Capital Markets Lime Connect Equity Through Education Scholarship www.limeconnect.com/programs/page/bmo-capitalmarkets-lime-connect-equity-through-educationscholarship Disability Care Center Scholarships www.disabilitycarecenter.org/giving-back/scholarships/ Fred J. Epstein Youth Achievement Award www.smartkidswithld.org/2018-fred-j-epstein-youthachievement-award/ Gemm Learning www.gemmlearning.com/about/ www.gemmlearning.com/about/scholarship-opportunities/ Global Teletherapy www.globalteletherapy.com/ www.globalteletherapy.com/scholarship/ Google Lime Scholarship www.limeconnect.com/programs/page/google-limescholarship Joseph James Morelli Scholarship www.parkcitycf.org/morelli/

Karman Healthcare www.karmanhealthcare.com/ www.karmanhealthcare.com/scholarships/ 180 Medical www.180medical.com/todds-story www.180medcial.com/scholarships

Additional Scholarships American Cleft Palate-Craniofacial Association www.acpa-cpf.org/ www.cleftline.org/parents-individuals/awards-scholarships/ college-scholarships/ Diabetes Scholars Foundation www.diabetesscholars.org/ www.diabetesscholars.org/college-scholarship/ Organization for Autism Research www.researchautism.org/ www.researchautism.org/how-we-help/scholarships/ Phoenix Society for Burn Survivors www.phoenix-society.org/ www.phoenix-society.org/our-programs/education-grant

Microsoft DisAbility Scholarship

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AmeriDisability Magazine  

America's Publication for the Disability Community.

AmeriDisability Magazine  

America's Publication for the Disability Community.